Giving Our Angel Wings to Fly...

Foundation for Angelman Syndrome Therapeutics PSA by Hulu

2012-01-19T20:29:00.001-06:00

Amazing!! Hulu.com, a website offering on-demand streaming video of TV shows, movies and webisodes to MILLIONS of viewers is now running the following Public Service Announcement for Angelman Syndrome.Thank you Hulu.com!

FAST and Angelman Syndrome Go Primetime!!

2012-01-07T23:47:00.000-06:00

Chia and Fruit Pudding

2011-11-15T11:53:00.001-06:00

I call it pudding, it's a pudding consistency, but nothing like JELLO pudding, made with milk! ;-)

I make up the chia and fruit pudding using different organic frozen fruits. This batch was made with peaches and mangoes, but the last one I used blueberries and mangoes. You can use whatever your child likes, but I've read that it is good to rotate it some, as you can develop allergies to foods that you eat too often. That is why I played around with this, because Josh was eating WAY too much applesauce and it was beginning to give him re-flux.

I get my chia seeds here: at Raw Food World. You can go there to read all of the nutritional benefits of chia also. For 10% off of your oder, you can use the promo code HONEYMOON. I buy it often and keep them in a jar, since we use it pretty often.

First you put the organic fruit in the blender or food processor with about a 1/4 cup of water, add a little more as needed.

I then add another 3/4- 1 cup cup(s) of water to it, and 2 tablespoons of Agave nectar.

Add only 3/4 cup first stir in the chia and see if you think it needs more water. You could even use a fruit juice if you like!Put it into a bowl, and add 4 tablespoons of chia seeds and stir!

Now, you cover it and refrigerate for at least 8 hours, so that the chia seeds have ample time to soak up water. This is a very hydrating treat! It turns very gelatinous! Joshua really enjoys this.

Joshua tends to choke after about 5 bites of food, so I use this as a palate cleanser in between bites, it really helps!!

Squash/Kale and Eggs

2011-11-11T11:46:00.001-06:00

I've discovered a new twist, to make Joshua's beloved eggs for breakfast, more nutritious. Adding in yellow or zucchini squash and a little green. You could use spinach or kale for the green, but I used kale today. If your child is aversive to seeing green in their eggs, just use the squash and it's just yellow, like eggs. ;-)

First thinly slice the squash, and sauté it in a pan with some extra virgin olive oil. I cover the pan and set timer fir 5 minutes. While that's going, I thinly slice two leaves of kale, and then throw it into the pan after the 5 minute timer goes off on the squash. Sauté for another minute or two, until the kale is a vivid green.

Next two eggs, sunny side up.

Throw it all in the food processor, and voila'!

Joshua LOVES it!

FAST Newsletter, November 2011

2011-11-04T16:08:00.002-05:00

The latest edition of the FAST Newsletter has arrived!

November 2011, FAST Newsletter

Click the above link to read the following articles:

You had me at hello
by Debbie Guagliardo

Approaching clinical trials… “What a long, strange trip it’s been”
by Edwin J. Weeber, Ph.D.

Questions regarding the potential clinical trial
by Rebecca D. Burdine, Ph.D

Opinion piece— clinically important
by Rebecca D. Burdine, Ph.D

Meet our new postdoctoral fellows

Thoughts on the word “cure”
by Rebecca D. Burdine, Ph.D

Jamie Berkley Memorial Tournament

The turning point
by Paula M. Evans

What I did this summer
by Tina Thompson

Ready for my close-up… in the Ville
by Sharon Weil-Chalker M.D

Events and fundraisers

2011-10-24T16:24:00.000-05:00

Angelman Syndrome Jumps from 1:15,000 Births to 1:1,500 for Babies Born Using IVF

2011-09-26T15:50:00.001-05:00

In-vitro fertilization linked to rare genetic disorders

REUTERS / Kacper Pempel

A doctor injects sperm directly into an egg during an in-vitro fertilization (IVF) procedure in Warsaw.

Tom Blackwell Sep 25, 2011 – 9:41 PM ET

A University of Toronto geneticist is calling for more study of a link between fertility treatment and certain rare genetic disorders, noting that babies born after treatment are up to 10 times more likely to suffer from the conditions — one of which causes serious mental disability.

And that is likely just the tip of the iceberg, Dr. Rosanna Weksberg said after addressing Canada’s fertility-medicine community recently.

Dr. Weksberg said she supports in-vitro fertilization and other reproductive-technology procedures, with the “wonderful” benefits they usually bring families, but noted that she is already seeing many fertility-treatment offspring with one of the conditions show up in her genetics clinic.

Called Beckwith-Wiedemann syndrome, causing symptoms such as unevenly sized limbs, an enlarged tongue and a high risk of kidney tumours, it occurs in one of every 1,300 such children, compared to one in 13,000 in the general population.

Further research is required, said the physician at Toronto’s Hospital for Sick Children, to deduce why the treatments sometimes trigger genetic abnormalities — though still in a relatively small number of cases — and devise ways to make the treatments safer.

“We are seeing a significant increase in risk,” she said after her presentation to the Canadian Fertility and Andrology Society conference. “The most important message is … we need follow-up study.”

As she finished her talk, the fertility doctors and scientists politely applauded, filed out to their morning break and asked no questions, a contrast to previous speakers. The apparent lack of interest was “very telling,” Dr. Weksberg admitted with a smile later.

She said she would like to partner with one or more fertility clinics to study larger populations of children born with the help of reproductive technology, though so far has no takers.

She also said one of her “biggest disappointments” was that a Supreme Court of Canada ruling late last year had ruled unconstitutional most of the federal Assisted-human Reproduction Act, since the agency set up by the law could have played a key role in spearheading such research.

A spokesman for the fertility society said the industry is, in fact, keen to get to the bottom of genetic disorders connected to its work, but no clinic could afford to fund research on its own.

“It’s a very real source of concern,” said Dr. Roger Pierson, a University of Saskatchewan fertility scientist. “We’re still in the first two generations of people born with assisted-reproduction technology … and there is lots we don’t know about them.”

The genetic conditions detailed by Dr. Weksberg include not just Beckwith-Wiedemann, but also Angelman syndrome, which can cause serious mental retardation and speech impairment, and jumps from one in 15,000 births to one in 1,500 among fertility-treatment kids, she said.

There is also evidence of an increase in the likelihood of a baby being born at a low weight, and conflicting research suggesting an increased risk of autism, she said. Other findings may well come. “It’s the tip of the iceberg,” said Dr. Weksberg.

The exact cause of the genetic problems is unknown, but is likely a combination of the biological parents’ infertility problems and genetics, and the treatments themselves, said Dr. Weksberg.

Earlier, the conference heard from a U.S. scientist who told of new innovations in diagnosing genetic problems before in-vitro fertilization is performed, and in fetuses during pregnancy.

Dr. Matthew Rabinowitz, CEO of the company Gene Security Network and originally trained in physics and engineering, entered the field only a few years ago after witnessing a relative’s traumatic experience with a baby who was born with a genetic disorder and eventually died.

He said his analysis of the genetics of embryos, using results of the human-genome project, provide a more accurate prediction of problems like Down’s syndrome than conventional testing. Similar, non-invasive genetic testing is now also possible of fetuses during pregnancy by looking for fetal DNA in the mother’s blood, he said.

“This is something we really hope will change the practice of pregnancy management around the world,” said Dr. Rabinowitz, also a professor at Stanford University.

In fact, the work is of such innovation it could one day lead to a Nobel prize, predicted Dr. Pierson, calling it “brilliance beyond the norm.”

The research also raises moral and philosophical questions, though, since the testing potentially leads to the rejection of embryos for IVF or termination of pregnancies when genetic problems like Down’s are detected, he noted.

National Post
tblackwell@nationalpost.com

Entire article taken from the National Post.

Snaggle Toothed Pooh Bear

2011-09-16T23:37:00.001-05:00

I haven't posted any pics of the Pooh Bear in a while, so here are a few. He's just lost his two front teeth and looks adorable!

Actually his dad pulled one of them and his dentist pulled the other one. He was very brave at the dentist. I was so impressed by his new dentist and the staff there. They were so sweet and gentle with Joshua! I will be recommending Dr. Hoffman to all who ask for a dentist referral, from now on.Joshua did fantastic with the papoose board, it calmed him down immediately. I was so impressed with that. They had a flat screen tv right over his head and he watched Tangled. He and his Sissy watch that one together a lot, and it's the only cartoon that he will watch. He is usually not too interested in cartoons, and prefers The Wiggles, Sesame Street, Barney and Blue's Clue's; real people, grown up's and kids, puppets, muppets and such.

He will go back to the dentist in a few weeks. At that visit, he's going to be getting sealants on his back molars. He will be disappointed to not get his teeth polished, I think, he adored the vibrating and tickling! At least they will still be using Mr. Thirsty, the suction tool, that one is pretty funny too!

We WON!

2011-09-15T15:31:00.000-05:00

FAST won the Vivint Gives Back contest. I am very late in reporting it, sorry! ;-) Here is video that you can watch of our family, and Paula Evans, chairperson of FAST, accepting the check at Vivint, in Provo, Utah.

FAST - Winner of Vivint Givesback Project 2011 from Marcel Cairo on Vimeo.
.
I'll try to write more very soon, about the whole experience of going to Vivint, it was FABULOUS! Thanks so much to everyone who helped us to win this, it's amazing how many parents, and family, and friends, and even sales people at the mall (seriously) that were voting! What an experience to feel all of that love and support pouring into our community!Love one another~Yvonne

Genetic Engineering Cures Mice of Brain Disorder

2011-08-25T19:28:00.002-05:00

Genetic engineering cures mice of brain disorder

BY: MELISSA MARINO

Children with Angelman syndrome are often seen laughing and smiling, but this cheerful demeanor masks serious neurological problems — mental retardation, movement problems and seizures.

2/09/2007 - Edwin Weeber, Ph.D., is studying Angelman syndrome. (photo by Susan Urmy)

New research in mice, however, suggests that many of these deficits could be alleviated.

Edwin Weeber, Ph.D., and colleagues reversed the neurological deficits in a mouse model of Angelman syndrome by preventing the inhibition of CaMKII, an enzyme highly expressed in brain regions affected by Angelman syndrome.

The results, which appear in the March issue of Nature Neuroscience (currently available online), reveal an important part of the mechanism underlying the condition and point to potential therapeutic targets for treating these symptoms.

Angelman syndrome, which affects approximately one in 15,000 children, is a debilitating neurological disorder characterized by mental retardation, severely limited speech, and movement and balance problems.

In 1997, researchers determined that Angelman syndrome was caused by a mutation in a single gene, called UBE3A.

They subsequently developed a mouse model of Angelman syndrome by mutating this gene.

But the finding was baffling, said Weeber, because UBE3A is a “housekeeping” gene, meaning that it broadly regulates cellular processes not particularly specific for any of the neurological deficits seen in these children. Specifically, the protein encoded by UBE3A “tags” other proteins for degradation by the cellular “garbage disposal,” the proteasome.

“The most difficult thing to rationalize was that this housekeeping gene — which nobody thought did anything — caused severe mental retardation,” said Weeber, an assistant professor of Molecular Physiology and Biophysics and Pharmacology and senior author on the study.

“So we started trying to identify some of the protein's molecular targets.”

In the process, Weeber and colleagues identified an abnormality in the Angelman syndrome mouse model — changes in an enzyme called calcium/calmodulin-dependent protein kinase II (CaMKII), which is important in the cellular processes that underlie learning and memory.

They found that, in Angelman syndrome, CaMKII activity was reduced due to an inhibitory chemical modification (phosphorylation). Because of CaMKII's prominent role in neuronal function, Weeber suspected that this might account for many of the neurological deficits seen in Angelman syndrome children.

Fortuitously, one of Weeber's colleagues — Ype Elgersma, Ph.D., at Erasmus Medical Center in Rotterdam, Netherlands — had created a mouse with a mutation that prevented this inhibition of CaMKII.

The researchers decided to breed the Angelman mice with the CaMKII mutant mice to see if counteracting the CaMKII inhibition would alleviate the neurological problems.

The researchers then ran the resulting “double mutants” through a battery of neurological and cognitive tests.

Angelman mice performed poorly on learning and memory tasks and displayed impaired motor coordination.

The double mutants, however, showed normal learning and memory and motor coordination. And while the Angelman mice were also prone to seizures, the double mutants showed very low seizure susceptibility.

Weeber was surprised by the robust results. “We thought we might rescue some of the deficits that we saw in the mouse model,” he said. “We had no idea that we were going to rescue basically everything.”

Although impossible to apply the genetic engineering used in the current study to correct these deficits in mice to humans, Weeber thinks that the findings may point to new therapeutic targets for the disorder.

“It's very conceivable that if we can figure out what lies between UBE3A and CaMKII — and if it's a specific path — then that could be a therapeutic target.”

But the results may apply more broadly, Weeber said, to other types of mental retardation syndromes that remained unexplained and untreatable.

“There are a lot of mental retardation syndromes that we still don't understand. Maybe the changes in CaMKII associated with Angelman syndrome could be implicated in other mental retardation syndromes as well.”

Weeber is also an investigator in the Vanderbilt Kennedy Center for Research on Human Development.

Taken from original source: VANDERBILT UNIVERSITY MEDICAL CENTER'S WEEKLY NEWSPAPER

What my friend Bronwen and Actor Colin Farrell have in common...

2011-08-24T23:11:00.001-05:00

Article taken from origninal source: Chester County Moms Blog

http://www.chestercountymoms.com/2011/08/what-my-friend-bronwen-and-actor-colin.html

Wednesday, August 24, 2011

What my friend Bronwen and Actor Colin Farrell have in common...

This post is written by one of my oldest and dearest friends Bronwen Ward. Bron is the mother of two beautiful girls Hannah and Lily. Today is Lily's Birthday and in honor of her Birthday I wanted to share her story and help draw awareness to a cause that my friend Bron has been campaigning for the past few months.

Lily has a smile that is infectious. It’s big and bright and totally pure. Her laugh is amazing. She makes the people around her smile and laugh with her. Lily has red hair, big blue eyes, and skin so pale she is practically translucent. She looks like an angel, and she is. Lily hasAngelman Syndrome.

Angelman Syndrome (or AS) is a neurodevelopmental disorder affecting approximately 1 in 15,000 births. Although the cause of AS is known, there are currently no treatments available for this disorder
Lily was diagnosed with Angelman Syndrome at ten months old. She was diagnosed through genetic testing, after visiting multiple doctors because of reflux; physical therapists because of unmet milestones; and a general feeling of “something just isn’t right”.

When your pregnant with your second child, of course everything will be perfect. Just like the first time. Plans are made. Everyone is excited. Big sister, Hannah, has such plans for the new baby. Hannah has decided that they will be best friends, become veterinarians together, and raise their families together. Pregnancy, labor and delivery are all fine. It’s the after that’s not.

When you have a baby, there is no ceiling. The sky is the limit. Everything and anything is a possibility. After a diagnosis like Angelman Syndrome, you have to rethink your lifestyle, your life plans, your everything. I went through a mourning period. I mourned for the fact Lily would never get married, never have babies. I mourned for the fact that life would be harder for her. She would have to struggle to do the simplest tasks. I was so sad for Hannah, that her dreams for her sister would not come true. Amazingly, she told me, at the age of six, that it was alright if Lily couldn’t become a vet. Lily would live with her, and she, Hannah, would take care of Lily. I’ve discovered over time, that, you have these dreams and hopes, but they are flexible. They are ever changing. I was sad and heartbroken, but Lily was happy and loved. She helped fix me.

Lily will be six in August, and we are at the five year anniversary of our diagnosis. I say “our” because we are a unit. My husband, Adrian, my eleven year old, Hannah, myself and Lily. Having a marriage is hard already. Throw in a child with a disability, the fact that I had to quit my job so we are down to one income and the craziness of everyday life; it’s sometimes hard to keep our “unit” in working order. A sense of humor is a must. If you’re not laughing you’re crying. Sometimes we do both at the same time.

Lily has yet to walk unassisted, but is “cruising” around holding onto furniture. She was late to roll (18 months), to sit unassisted (2 ½ years), and to pull to stand (5 years). Because she is so mobile now we have to blockade her into a “lily proof zone” in the living room. She has been involved in PT and OT since she was six months old and we have seen some incredible progress. Whether it’s struggling to pick up a toy, to step sideways along the couch, or to get a cheerio into her mouth, she does not give up. Lily perseveres, and that shows her character. It may take her longer to get there, to learn the skill, but that makes the feeling all the sweeter when she does. You never take anything for granted as the parent of an Angel. Every milestone is a reason to celebrate.

Lily had her first seizure at the age of one. We were told to expect them but we didn’t know what kind she would have. Lily gets “drop” seizures, or atonic seizures. She would be happily playing one minute, and the next go limp, and crumple to the floor. It was heartbreaking to see and very upsetting and scary for her sister. We have her seizures under control with multiple medications, which we give to Lily like clockwork. When she has a break through seizure we take precautions to keep her safe until they are under control again. I consider us lucky. The Angelman community has lost Angels because of uncontrollable seizures, and that is heart breaking.

My Angel has never spoken a word, but she talks all the time. I describe it to people as chirping, squealing, and squawking. She has no problem interrupting your conversation and sometimes we just can’t get her to zip it. I sometimes have dreams where she talks to me and her voice is tiny and sweet.

Lily is tiny, only thirty pounds. It’s hard for her to gain weight because she does not eat much solid food. She is fed mostly by bottle with the occasional pick-up of cereal or diced fruit thrown in. Her GI system is in chaos. It has always been this way. She has a hard time holding down her bottles, and the tiny amounts of solids are worse. It’s reflux, the doctors say. She will out grow it. Uhh….when? They said that at a year, at three. Now they admit they have no idea why her body reacts this way. Nothing abnormal in all of the studies. This is just the way she is. So, we manage. We do a lot of laundry, and I keep meaning to steam clean the carpet more often. Frustrating, yes. But hopefully, someday, she will be able to eat what she wants, whenever she wants it.

Lily rarely sleeps. I’m not sure how much she actually gets, but somewhere between 3to 5 hours a night. She sleeps in an amazing bed that is totally safe, big and comfy. It’s high on all sides so she can’t climb out. Angels are amazing climbers. She spends the night thumping and banging around in her bed, very content with her nightlights, and African lullaby music.

Lily loves music. Heavy metal, reggae, and classic rock. She loves to “feel” it. She enjoys a good cuddle, and is the only six year old I know that will watch two hours of HGTV with me and not complain. She is always on the go and must be watched at all times. I’ve turned my back for a second and she’s chewing on my shoes by the front door, or splashing around in the toilet. Nothing is sacred in our house. If it can’t get thrown in the washer, we don’t get it. If it can’t be wiped down with a Clorox wipe, it does not enter.

I live in a world where there is no such thing as a good night sleep, where there are sleepers that zip up the back and duct tape on diapers. Where there are bite marks on all my furniture and I have a real live sock monster (yes, Lily eats socks). In my world, we don’t save for Lily’s college fund; we save for her trust fund. We don’t have play dates, we have PT. I live in a world where my eleven year old knows the names and dosages of all her sisters’ medications. It’s a crazy world; hectic, loud and sometimes smelly. I love it here. Yes, sometimes it would be great if things were a tad easier but it’s nice here.

I have a husband who loves/puts up with me. I have two beautiful daughters. Hannah, who has learned early that things don’t always turn out as planned, that you make the most of what you’ve got and that everyone is a person and deserves respect. These are things I didn’t learn until I was older, they are hard and sometimes difficult lessons to learn but she has done amazingly well. She is Lily’s protector, her cheerleader and the only one who can get Lily to eat when she is sick. Sometimes Lily will do something to annoy Hannah and I will hear the, “Mom! Lily just drooled on my ipod! Get her away me!” and I will smile because it’s a wonderful thing.

Lily is an Angel. She is a sticky, smiling, energetic, loud, and sometimes annoying Angel. She does not listen. She kicks you hard to say hello. She may nibble on you if she likes you. She gives love unconditionally and you cannot help but love her back. She is perfect just the way she is and she has made us who we are.

Bron is sharing Lily's story in hopes that you will join her in supporting Foundation for Angelman Syndrome Therapeutics (FAST) and VOTE for FAST to win a much needed grant from Vivint Gives Back Project. Winning this grant would kick-start a clinical study in humans for an FDA approved therapy that has already reversed Angelman Syndrome in a mouse.

The Foundation for Angelman Syndrome Therapeutics (FAST) is an all volunteer organization dedicated to finding a cure for Angelman Syndrome.

A few weeks ago, Golden Globe winning actor Colin Farrell discussed Angelman Syndrome and his support of FAST on Late Show with David Letterman. The actor revealed that one of his sons has been diagnosed with Angelman Syndrome.
He asked viewers to support FAST and talked about the opportunity to secure research funding money through the Vivent Gives Back Project.

Click here or on the banner above to vote for FAST. Vote today and everyday until August 27th. For help or questions on voting, click here.

Texas "Interest Lists" for Children with Special Needs

2011-08-15T19:43:00.006-05:00

In Texas, there are waiting lists or "interest lists", for MCDP, CLASS, HCS...all medicaid waiver programs.

Our son Joshua is now on the MCDP program, through it he receives Medicaid, respite care, diapers (after age 3), certain amount of money for equipment per year. We were able to install a lift on our van for his wheelchair through this program. I think the wait for this list is typically 3-5 years. If your child has severe medical issues, there is also a Ryder 28 program, that they can qualify for, to get into the MDCP program sooner. Sadly, a mom I know with a daughter with AS, was just told they did not qualify because her daughter would either have to have a feeding tube, multiple siezures per day, for the last 6 months, renal failure or on a vent. My Joshua got on through the Ryder 28 program, but back when it wasn't as strict as it is now.

It's very sad that they make it so hard for someone who needs help so desperately! SO PLEASE, get on these lists as soon as possible! If I am out and even see a mom with a child with special needs at the mall ect. I make sure they know about these programs, because normally no one else tells you about them. Most often parents have to learn about them from another parent! I feel ECI worker's should be RESPONSIBLE to get parents signed up for these programs. If by the time your child's name comes up on the list and they are no longer delayed, then great, but they should inform parents EARLY on, especially parent's of children who are severely delayed.

CLASS or HCS are the "granddaddy" programs, you get a MANY more respite hours, and therapies are included in both of those, such as horse therapy, aqua therapy, camp costs, ect...that are not paid for through MDCP.

All three programs come with Medicaid attached. This can be your child's primary insurance only if your family does not have medical insurance. The way it normally works, is your family's insurance through your's or your spouse's employer would be your child's primary insurance and the Medicaid will become your child's secondary insurance. That is how it has worked in our family. It is great though, because, the primary insurance pays what it will and the secondary picks up the rest. We pay no co-pay's this way, which is very nice, especially for specialty doctors such as neurologist's and genetics, which normally have a higher co-pay.

IF you have to pay for your family's medical insurance through your employer, many times you will qualify for the HIPP program. ASK ABOUT IT! Our family does not have to pay for our insurance through my husband's company, so we do not qualify for HIPP, but if you do pay, the HIPP program will reimburse you for the costs of your whole family's insurance, not only the child's.

To get on the HCS "interest list" you call your local MHMR office and ask to talk to someone who can put you on the list. I would call and say you are calling for an INTAKE appointment, you have to use those words or they will act like they have no idea what you are talking about. That was my experience anyhow! When you do your intake interview, they will ask you if you are on the list or not, and will do it for you then if you aren't.

MHMR of Tarrant County

3840 Hulen Tower North

Fort Worth, TX 76107

Intake Phone: 817-569-4000

Main Phone: 817-569-4300

Website: http://www.mhmrtc.org/ (check the website for other counties)

To get on the MDCP and CLASS interest lists you call the DADS office, I'll give you the website links that explain more about each program. Here is the Region 3, Tarrant County # Region 3: 1-888-337-6377 (check DADS website for other counties)

A friend, just today, gave me the MDCP number in Austin, 1-888-438-5658, she called and asked to try to get on the Ryder 28 program. So try both numbers if one gives you the run around!

This one explains MDCP

http://www.dads.state.tx.us/providers/MDCP/index.cfm

This one explains CLASS

http://www.dads.state.tx.us/providers/CLASS/index.cfm

HCS

http://www.dads.state.tx.us/providers/HCS/index.cfm

You can be on all of the interest lists at the same time. You just cannot be actually receiving more than one at a time. So when our number comes up on the CLASS list, we'll drop out of MDCP, and the same with HCS.

I hope this is some help to someone trying to navigate the "system".

Love one another~ Yvonne

FAST Needs Your HELP NOW More Than EVER!

2011-08-12T15:31:00.002-05:00

Dear FAST supporter,

Thanks to you, FAST still holds 1st Place in the Vivint Gives Back Project and stands an excellent chance to win the $250,000.00 Grand Prize. We would like you to know that these funds are currently earmarked to support a human clinical trial of an FDA approved compound that has already been shown to provide a relief of symptoms in the Angelman Syndrome mouse model.

Unfortunately, there are two organizations in the contest that have decided to team up and align against FAST to knock us out of first place. In fact, they are contacting most of the other contest participants and trying to convince them to all vote for Team Sanfilippo Foundation (currently in second place). We now need your help more than ever!!!! FAST is winning this contest because our community has worked hard; let’s make sure to keep up our hard work and re-double our efforts so that we come out on top!!!!!

If you have been voting every day, thank you!!! If you vote occasionally, please make sure to do it every day now – there are only two weeks left. If you haven’t yet voted, please start now – we need your help!!!!!! And if every single one of you could get your family and friends to vote with you every day until August 27th, we will prevail!!!!

For easy to follow voting instructions, visit www.HelpSaveTheAngels.com or visit www.CureAngelman.org.

The FAST team thanks you for your support and dedication to our cause!!!

Sincerely,
The Board of Directors
Foundation for Angelman Syndrome Therapeutics

Speechless Beauty

2011-08-12T12:41:00.003-05:00

Love one another~ Yvonne

Don't forget to VOTE! Help Save The Angels

The prayer that NEVER fails...

2011-08-11T23:24:00.008-05:00

Many of you know of my LOVE for the Mitford series.

During the stressful days of this contest, I have been able to read nothing else. It's a peaceful, sanctuary for me. Tonight, there a bit of stress, behind the scenes stuff that I am not able to go into.

It has made me realize that maybe God has put me in Miford, to steep there, for such a time as this.

Father Tim, the main protagonist, quotes a lot of scripture throughout the books, so I have memorized quite a few pieces, during my extended stay. He is also known to, throughout the series, say to others that all there is to do is "pray the prayer that never fails".

I am in my third reading of the series, over the past three months. Hearing that over and over again...

Tonight when things look bleak and I would normally be very upset, I instead find myself praying "the prayer that never fails".

Wondering what that prayer is?

Here it is, so simple, yet so powerful and at the same a surrender...Lord, YOUR WILL be done.

There isn't anything that I can hope for, that would be better than my God's will for my life.

If you haven't read the Miford series, do. You will be blessed, I can promise you that.

Overheard today: Lots of whining and toilet flushing. Joshua and I both have a stomach bug/headache. Lots of piano playing. Caylee has been playing piano to soothe her brother, he loves to hear her play hymns. My sweet girl has such a tender heart for her brother.

Love one another~ Yvonne

Don't forget to VOTE! Help Save The Angels!

Help Save The Angels!

2011-08-11T11:07:00.000-05:00

Thanks so much to a great friend of FAST, Jellybean, friend of Marcel Cairo. Let's all help Jellybean out, okay?

Love one another...and VOTE for FAST!~ Yvonne

Hope is...

2011-08-11T00:31:00.005-05:00

16 more voting days left.

So thankful for all who have stuck in this long and helped us to get where we are. Like Dory says "Just keep voting. What do we do, we vote, vote.." or was that swimming?

It only feel like the contest that never ends...

It's awesome to have the end in our sights.

Hopefully, on August, 27, 2011 we will have 250,000 reasons to celebrate!

Overheard today: Caylee is taking Joshua to potty before bed and he is a hooting and hollering in there, he really thinks going to the bathroom is a LOT of FUN!!! He cracks me up! I just stuck my head in there and said 'ewww it's stinky in here', and it's a good thing he's wearing a seat belt or he would have fallen right off of the pot!!

Love one another~ Yvonne

Looking For A Cure...

2011-08-09T19:09:00.002-05:00

Beautiful things are happening!

2011-08-08T21:42:00.002-05:00

Just can't get enough of seeing the FAST website on the screen of The Late Show with David Letterman! Pretty amazing! Almost as beautiful as Colin himself. ;-)

Our Angelman community is so proud of dad, Colin Farrell, for speaking out about his son, James, and Angelman Syndrome. The awareness that his appearance has created has been pretty outstanding so far. Even Alyssa Milano has tweeted about it, to her over 1 million, followers! Pretty cool!

I believe this is the year for Angelman Syndrome, for our kids!

A new blog has been created by a child with AS, well really his dad, but it's super funny and just one of the examples of our AS parent's and their super creative ways of fundraising. Check it out: Angelman Sucks, But I'm a Bad Ass, So Bring It On.

Keep voting!! We are over 12,000 votes ahead of 2nd place right now, but it's still so important to not let up now! Go to Help Save The Angels and vote every day until Aug. 27th~

Love one another~ Yvonne

Colin Farrell Speaks About Angelman Syndrome on Letterman

2011-08-05T01:53:00.009-05:00

Colin did an outstanding job on the The Late Show with David Letterman tonight! Our whole community is buzzing, I imagine everyone can feel it right? ;-) We are all so very proud of Colin for speaking about his son, for conveying, so very well, what a joy and blessing and light our children are, and the urgent need for funding for research!

Thank you to David Lettermn, who asked the right questions of Colin, who took the time to make sure that the website was known by the viewing audience, and most of all for his genuine concern and interest!

If you are here because your internet search of Colin Farrell brought you here, please visit the Foundation for Angelman Syndrome Therapeutics to learn more about how you can help. Also visit Help Save The Angels and learn how just a vote a day until August 27th can help us win $250,000 for the much needed research that Colin spoke of, to CURE our children with Angelman Syndrome.

Thanks so much.

Love one another~ Yvonne

An Angel in our Midst...

2011-08-02T22:45:00.004-05:00

An Angel in our Midst...

ORIGINALLY Posted by CRAP Mamma

When we commence our parenting journey we hope and strive for the very best for our children. We want them to be the best they can be. We dream about what they might become, who they might become, what they will accomplish in their lifetime. For Meagan, her hopes and her dreams for her daughter Molly faltered when her little girl was diagnosed with Angelman Syndrome just after her first birthday. Following this, Meagan’s dreams for her daughter became more simple, more basic, more grounded and all along the way she has had to fight to ensure that little Molly will achieve all of them.

This is a raw and honest depiction of life with a beautiful special needs child. Driven to the depths of depression and despair then salvaged through self-determination, friendship and self-belief, Meagan tells her story of her fight to give her daughter a voice and to find her place in this world.

This is Meagan’s story of her beautiful daughter Molly……

Molly

Who is Molly?

Molly is the youngest of our two daughters; a tenacious, inquisitive and beautiful child, she’s just celebrated her fourth birthday. Just after her first birthday Molly was diagnosed with Angelman Syndrome. It rocked our world.

The Tough Road to Diagnosis

When we were on our way for our 6 month immunisations we stopped at the local supermarket. Molly was in the trolley baby capsule and we passed another mum with her little boy. He looked about Molly’s age and he was sitting and feeding himself a rusk. With our first daughter we religiously checked her progress in developmental books; with Molly we thought we were old hats! I couldn’t believe we had missed this!

When we compared her to the standard milestone checklist at her 6 month immunisations it really hit home that Molly was behind. So began an exhausting six month process of tests and assessments, paediatricians and specialists to determine the cause of Molly’s developmental delays. I had done a fair bit of Internet research and based on a few of her symptoms and behaviours I found Angelman Syndrome and discussed this with her specialists. It took four separate ‘discussions’ over a four month period to finally have the test done. My suspicions were confirmed.

Significantly today marks three years to the day since Molly has been diagnosed. It's a day of mixed emotions....

When the whole process of diagnosis began I developed severe depression which affected the way professionals regarded me – given the circumstances of course I was depressed but I still hadn’t lost sight of the fact that I needed to find answers for my daughter. I needed them to listen to me and to treat me with respect. Ironically Dr Harry Angelman, who discovered the syndrome, has often been heard telling his students “Your greatest ally is an observant mother – listen to her”. That’s some good advice.

What is Angelman Syndrome?

Always quick with a smile...

Affecting between 1 in 15,000 and 1 in 20,000 children Angelman Syndrome is caused by one ineffective gene (ube3a). In Molly’s case she is missing a piece of DNA so small from Chromosome 15 that you can only see it through a high-powered microscope. The loss of that single gene means that she has a movement and balance disorder that affects her ability to learn to walk, although we hope that she will walk within the next few years with the assistance of therapy. Molly will never speak and she has severe seizures which can be difficult to control. When she was younger she had problems with reflux and gaining weight so she had a gastric feeding tube put in her tummy which has only just been removed recently. One positive of this horrible syndrome is that Molly has a very happy disposition, she is very social and an absolute joy to be around.

The Guilt

I felt horrible when we started the path to diagnosis, and still did for some time after. I felt a terrible sense of guilt, like something I had done during my pregnancy had caused this. I’ve since discovered this isn’t true and 99% of the time AS is a random that doesn’t run in families. Regardless I re-lived things that had happened in my pregnancy trying to assign blame; I also blamed myself for not seeing the developmental delays earlier.

Ultimately I had almost come to the unthinkable decision that my family would be better without Molly and me! Thankfully I confided in a friend and developed the strength, combined with anti- depressants to work my way through it.

For me, the best support was talking about it. It was so hard to talk to a lot of people close to me as they didn’t understand what I was going through but again – looking back, they wanted to help and didn’t know how. My GP was great (with me), he could see the signs that I was depressed and referred me to a therapist. Personally I found talking with others more beneficial than the therapist, there are online chat groups where you can remain anonymous and ask others questions. However there is a fine line between looking for answers online for all hours of the night and retaining some semblance of sanity.

After diagnosis, even with the knowledge that the condition is random and could happen to anyone, I wasted many an hour blaming myself – what if I hadn’t fallen pregnant that month? What if it had been another egg? What if? What if? What if?

I don’t believe that special people are given special children, or necessarily that things even happen for a reason; I tend to think that it’s just another of life’s dynamics. However what Ido know is that I would never give Molly back.

A Day in the Life of Us

When you asked this question my initial thought was –just like everyone else’s day - busy, crazy…

Its only when I don’t have the kids around, or I see other families that I realise that life with Molly is almost like caring for a baby – a 15kg, 1m tall baby! I need to get her out of bed, take her to the toilet, feed her, bathe her, carry her and supervise her 24/7.

As for therapies - they are tedious. It is invasive to have someone else tell you how to teach your child things that should come naturally – but it’s also extremely necessary. Molly has speech, physio and occupational therapy. When we have time we try to fit in hydro therapy and we would eventually like to start horseback therapy as well. Therapies are what will help Molly reach her full potential. Unfortunately essential therapies like these are something a special needs mum often has to fight for with lack of resources across the board in Australia – just another job to do!

The impact of Angelman’s on Family Life

Like most families we are very, very time poor. We are often tired with Molly’s sleeping habits (some nights she might be awake for hours at a time and then still wake bright as a button!). Strangely enough – this is life as we know it.

We go about our day to day activities without giving too much thought to Angelman’s. Sometimes the fact that Molly has a severe disability is only highlighted by seeing the ease another young child learns new tasks (although I would never begrudge another mum bragging rights, and I never show my pain outwardly). Sometimes, her disability is made obvious to me by an ignorant stranger staring at her if she is communicating to me by making a loud noise, or telling me she is too big to be in a pram.

Sisterly love - Molly and her older sister Eva

One positive we have learned as a family is that we no longer sweat the little things. We have learned to be very appreciative of what we dohave, and not put too much worry into what we don’t. In the early days of diagnosis I worried for Molly’s older sister Eva. Eva started Prep this year and I am so proud of her, she is patient, understanding and an extremely compassionate little girl. Something that living with Molly and Angelman Syndrome has definitely taught her.

A Cure for Angelman Syndrome

At the moment there is not cure for Angelman’s. But (and I’m very aware that when I say this that some people look at me with pity; that I have false hope) I sincerely believe that we willhave a cure for Angelman Syndrome in Molly’s lifetime – and sooner rather than later. When I say a ‘cure’, I mean something to reverse the effects of the syndrome.

Research has only really started heating up in the last 10 years. We understand the syndrome and we know what causes it (there are a lot of conditions such as Autism where the cause is still unknown) and that’s really positive. There is an animal model that replicates the condition (enabling us to test scenarios and drugs) and the animal model has been cured. The scientific interest in Angelman Syndrome has risen tenfold in the last few years which is another indication that the finish line is near.

Unfortunately the main roadblock is money. Research isn’t cheap. Regardless, I look forward to the day that I hear my little girl tell me that she loves me.

Fighting for a Voice

When researching for our diagnosis as well as after Molly was diagnosed we noticed a huge void in information and support for families. We also found that a researcher in the US had “cured” Angelman Syndrome in mice and there was no research happening in Australia at all.

I set up a website called ‘Molly’s Voice’ and attempted to ‘talk through’ my wish list. I guess initially I was just putting it ‘out there’ into the abyss that is the World Wide Web. I also found it extremely therapeutic. Some goals that we set were to raise awareness in Australia as well as to promote research into AS. Another fundamental goal was to build a support network for Molly and to raise the profile of Rare Diseases.

Remarkably we now have a National Foundation, Foundation for Angelman Syndrome Therapeutics (FAST) Australia which is dedicated to raising funds for research into the syndrome in Australia. I also now sit on the board of FAST in the United States. We now also have an active Queensland support group and since starting this journey we have held three annual awareness walks in Cairns for Rare Disease Day and I have recently returned from Perth where people from across Australia met with the mission to form a National body to advocate for those with Rare conditions. Molly’s website has had over twenty five thousand hits and we receive and give support across the globe for the daily challenges of AS.

Advice to Other Parents

Don’t give up! You know your child better than anyone else. If you are not getting the answers you require, just ask and ask again. If you still aren’t getting anywhere, go to someone else and ask them. Don’t be too proud to medicate for depression, you have every right to be depressed but there is no shame in having a ‘crutch’ to help you through be it therapy, medication, whatever. My best advice is probably the hardest to take when you are actually in the situation and it is often only seen in hindsight, however it is this - things willget better.

For me, I’m stronger now that any mum should need to be. I’ve learned some tough lessons about life and people. I have learned to advocate and to stand up for the things I believe in, but most of all I have learned that love doesn’t need words.

Meags and Molly.....

Thanks so much to my dear friend Meagan for sharing her story x

For more information about Angelman Syndrome:

Foundation for Angelman Syndrome (FAST) Australia:http://www.cureangelman.org/au/

Molly’s Voice: http://www.mollysvoice.org/

Taken from ORIGINAL SOURCE: CRAP MAMMA - Creative Relaxed Approach Parenting FABULOUS blog!!

Local Angelman Syndrome Group Moves Closer to $250K Grant

2011-08-01T21:17:00.000-05:00

Local Syndrome Group Moves Closer to $250K Grant

As of Wednesday morning, FAST leads with more than 15,500 votes.

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One of the many frustrations parents of children with Angelman syndrome face is how close they are to a cure. Yet a lack of funding for research continues to be a roadblock to making it happen.

Researchers in Florida already have cured mice of the rare genetic disorder, which is characterized by cognitive delays that impact both movement and speech.

Now they need to re-create that cure in humans.

The Foundation for Angelman Syndrome Therapeutics, co-chaired by Darien’s Paula Evans and Debbie Guagliardo, is in the running for a $250,000 grant to help fund research for an Angelman’s cure. Evans is the mother of 6-year-old Ainsley, who was born with Angelman.

Home automation company Vivint is running a contest to award $1.25 million in funding to various charities throughout the U.S. and Canada.

As of Tuesday afternoon, FAST was in the lead for the $250,000 grand prize, with more than 14,000 votes. Vivint will announce a winner Aug. 20.

Yvonne Hamrick, of Fort Worth, TX, entered FAST into the contest, which she discovered last year.

“I’m just a mom and saw this as something I could do,” she said.

While Hamrick's 7-year-old son Joshua has Angelman, she said even people without a direct connection to the disease are responding resoundingly to the contest.

Children with Angelman are unable to speak and often experience motor delays. Some, such as Joshua, can’t walk. They are also more prone to seizures, one of the leading causes of death in Angelman patients.

Yet despite the challenges they face, people with Angelman are also characterized by a remarkably positive, sunny disposition.

“Our kids are so happy and just draw people into their world,” Hamrick said.

Guagliardo, who serves as FAST’s chief financial officer, said she’s seen the same thing, with people all over the world voting to support FAST.

“People are really rallying together and the community is becoming much tighter and larger as a result,” Guagliardo said. “This has been unbelievable for awareness already, and there are [nine weeks] left.”

To vote for FAST, first you must “Like” the Vivint Facebook page. Then log in to the contest page and vote here: http://www.vivint.com/givesbackproject/charity/43

You can vote once a day every day until the contest ends in mid August.

For more information on Angelman syndrome, visit http://www.cureangelman.com.

Taken from original article: http://darien-il.patch.com/articles/local-angelman-syndrome-group-moves-closer-to-250k-grant

Insights for autism from Angelman syndrome

2011-08-01T17:58:00.000-05:00

Insights for autism from Angelman syndrome

Benjamin Philpot Angela Mabb Matthew Judson
19 July 2011
9:28 AM ET

Similar symptoms: Angelman syndrome is caused by a deletion in the same genomic region that is affected in some cases of autism.

The word 'autism' has unfortunately entered our common lexicon, but few people have heard of Angelman syndrome, a closely linked disorder that is also accompanied by deficits in cognition and language. Autism is frequently diagnosed in individuals with Angelman syndrome1,2.

Angelman syndrome also shares a common genetic basis with some forms of autism: disruption in the number of copies of the UBE3A gene. Studying the effects of altered UBE3A gene dosage is likely to provide insight into brain defects associated with Angelman syndrome and autism, and to suggest targets for therapies.

With the exception of sex chromosome-linked genes, one copy of every gene in the body is inherited from each of an individual's parents. People usually have both maternally- and paternally-inherited copies of these alleles, but there are some genes — termed imprinted genes — for which only one copy is functional.

UBE3A is one example of an imprinted gene. Only the allele inherited from the mother is functional in neurons, whereas the paternal allele is silenced. This silencing is mediated by epigenetics — a process in which chemical modifications to DNA alter gene expression without changing the primary sequence. Thus, expression of UBE3A in neurons is entirely dependent upon expression from the maternally-inherited allele. The most common cause of Angelman syndrome is a deletion of the maternal chromosomal region 15q11-q13, which includes the UBE3A gene. Mutations in the maternal UBE3A gene alone are sufficient to cause Angelman syndrome.

Molecular intersection:

Although multiple genes are likely to contribute to most cases of autism, one of the most genetically identifiable forms of autism is a maternal duplication of the same 15q11-q13 region3,4,5. The fact that maternal, but not paternal, duplications of this region are associated with autism implicates the UBE3A gene, because UBE3A is the only paternally imprinted gene in this region.

Although speculative and in need of rigorous testing, these observations suggest that multiple copies of the UBE3A gene can lead to 15q-linked autism. A lack of a functional UBE3A gene copy in neurons, of course, results in Angelman syndrome.

Considering the potential importance of UBE3A gene dosage in both Angelman syndrome and 15q-linked autism, there is increased interest in studying the role of UBE3A in neural functions. Surprisingly little is known about UBE3A, but this is beginning to change.

We know that UBE3A is a ubiquitin E3 ligase that is involved in the degradation of proteins via the ubiquitin-proteasome pathway. Because point mutations that eliminate UBE3A ubiquitin ligase activity are sufficient to cause Angelman syndrome, the most likely explanation for Angelman syndrome — and for 15q-linked autism — is accumulation or enhanced degradation of UBE3A targets.

There are potentially many UBE3A targets and these may be relevant to multiple signaling pathways across different brain regions and periods of brain development. In this way, inappropriate levels of UBE3A may account for the multiple hits that are believed to underlie most cases of autism. Accordingly, a clear research goal is to identify UBE3A substrates in the brain that contribute to neural dysfunction, and the resulting cognitive and behavioral deficits.

Researchers are beginning to identify these brain-specific UBE3A targets6. Last year, Michael Greenberg's laboratory at Harvard Medical School identified two protein targets of UBE3A, called ARC and EPHEXIN-5, that affect synaptic receptors — proteins involved in neurotransmission7,8.

Combined with the subtle changes in brain morphology seen in people with Angelman syndrome and autism, these observations support the idea that both are largely disorders of the synapse, the junction between neurons9.

Postmortem studies of Angelman syndrome have revealed brain region-specific reductions in the density of dendritic spines — the sites of connections between neurons. Changes in synapse density and morphology may also be common features of autism spectrum disorders10.

Common circuits:

By identifying brain regions with impaired synapses caused by inappropriate UBE3A levels, we aim to understand how disrupted circuits contribute to both Angelman syndrome and autism spectrum disorders.

Research published in the past few years indicates that lack of the UBE3A protein prevents brain circuits from strengthening in response to experiences in the mouse sensory neocortex, a brain region involved in regulating sensory perceptions11,12. For example, in mice, UBE3A is required for ocular dominance plasticity — a well-defined model in which brain circuits are refined in response to experience during a critical period of brain development.

Changes in the ability to modify brain circuits in response to experience could underlie the sensory processing and cognitive deficits associated with Angelman syndrome. Whether excessive UBE3A, as seen in 15q-linked autism, also results in altered circuit plasticity remains to be tested. We suggest that the circuits affected in Angelman syndrome are similar to those disrupted in 15q-linked autism and perhaps other autism spectrum disorders as well.

Because Angelman syndrome and 15q-linked autism result from a clear genetic cause, these disorders are comparatively more tractable for therapeutic intervention than are other forms of autism. By studying the mechanisms of UBE3A gene imprinting and the role of UBE3A in circuit development, our goal is to help pave the way for novel therapies for both disorders.

Behavioral interventions can partially restore synapse and circuit plasticity in Angelman syndrome mice12. This suggests that the mechanisms underlying synaptic plasticity remain intact in the absence of UBE3A. If the same applies to autism, then behavioral or pharmacological therapies have the potential to restore function.

The identification of pathways relevant to synapse dysfunction in Angelman syndrome and 15q-linked autism will largely be based on the identification of brain-specific UBE3A targets. It is likely that UBE3A substrates accumulate to inappropriately high levels in Angelman syndrome but are degraded to inappropriately low levels in 15q-linked autism. Pharmacological approaches could regulate key UBE3A substrates and the pathways through which they signal.

Because UBE3A targets may be too numerous to address individually, manipulating UBE3A expression levels directly is potentially a more promising therapeutic strategy. Indeed, our laboratory, together with our collaborators Mark Zylka and Bryan Roth, has been awarded a grant from the Simons Foundation, SFARI.org's parent organization, to identify ways to manipulate UBE3A levels as a treatment for autism spectrum disorders.

Benjamin Philpot is associate professor of cell and molecular physiology at the University of North Carolina School of Medicine. Angela Mabb and Matthew Judson are postdoctoral fellows in his lab.

Original source of article: Insights for autism from Angelman syndrome

The Foundation for Angelman Syndrome Therapeutics (FAST) Finalist in $250,000 Online Contest

2011-07-15T02:57:00.002-05:00

Vivint Gives Back Project Lets Voters Chose Favorite Non-profits FAST, One of 100 Regional Finalists; Encourages Supporters to Vote Now

July 8, 2011—The Foundation for Angelman Syndrome Therapeutics (FAST) is a regional finalist, and currently in 1st place, in the 2011 Vivint Gives Back Project, a national online campaign that will award $250,000 to the winning non-profit organization, and $100,000 to five regional charities throughout the United States and Canada.
Vivint, one of the largest home automation companies in North America, is hosting the second annual campaign, which lets voters nominate, endorse and donate to their favorite local causes.

During Phase One of the contest, which ran from April 25 to June 11, fans of Vivint’s Facebook page nominated and endorsed their favorite charities. Participants nominated 2,382 charities during the initial phase—a ten-fold increase over the 2011 inaugural contest—and cast 303,081 votes.
The top 20 charities in each of four U.S. regions and Canada (100 total) during this phase were named regional finalists and moved onto Phase Two, which started on June 14 and will run through 11:59 p.m. EST on August 27, 2011.

Vote Now!
Supporters of FAST can cast their votes for the organization at http://www.vivint.com/givesbackproject. In addition to voting, supporters can also make online donations. On select days during Phase Two, Vivint will match these donations dollar-for-dollar up to $50 per donor, and $2,500 per charity. Participants can vote for one finalist per day.

About FAST

The Foundation for Angelman Syndrome Therapeutics (FAST) is an all volunteer organization dedicated to finding a cure for Angelman Syndrome, a rare neuro-genetic disorder that causes severe intellectual and developmental delays. Individuals with Angelman Syndrome cannot speak. Many cannot walk. Almost all of them have debilitating seizures and all require life-long 24/7 care. Individuals with Angelman Syndrome tend to have a happy demeanor and are known for their fantastic smiles. Research has established that Angelman Syndrome is caused by the loss of function of a single gene. Scientists have already succeeded in reversing the effects of Angelman Syndrome in a mouse. This suggests that a cure for Angelman Syndrome is not only possible, but imminent. Curing Angelman Syndrome would open a gateway for curing other neurological disorders including autism and Alzheimer's disease. Join us now to be part of a miracle. Visit http://www.HelpSaveTheAngels.com for info on how to vote, click on First Time Voters Click Here. If you experience any problems in the voting process, click on contact us for quick response.

Angelman syndrome, which affects 1 in 15,000 live births. This genetic condition is seen in people around the world and there are almost no known risk factors. Known for their great laughs and tight hugs, individuals who have Angelman syndrome are almost entirely non-verbal, face severe delays in gross and fine motor skills and often experience debilitating and resistant seizures. Individuals with Angelman syndrome struggle on a daily basis to learn skills that come to others easily and require 24/7 care and attention throughout their lives. Recently, Angelman syndrome received nationwide attention because actor Colin Farrell revealed that his 7 year-old son has Angelman syndrome. FAST is committed to assisting individuals living with Angelman syndrome to realize their full potential and achieve the best possible quality of life.

About Vivint Gives Back

The Vivint Gives Back Project is a program of Vivint’s philanthropic initiative, Vivint Gives Back, which was created to focus the efforts of the employees at Vivint on banding together to alleviate hardship and restore hope for people in need. Vivint employees have the opportunity to contribute time and resources to service projects ranging from clean-up efforts in the aftermath of the Joplin, Missouri tornado, to providing meals at a Ronald McDonald House and adopting a local elementary school where our employees mentor and tutor students at risk in a long term relationship.

About Vivint
Vivint, Inc. is one of the largest home automation companies in North America. Operating throughout the United States and Canada, the company retains more than 5,000 employees and services close to 500,000 customers. With award-winning customer service and smart technology, Vivint is dedicated to enhancing security, increasing energy efficiency, and creating simple, affordable home automation solutions for its customers. For more information, visit www.vivint.com.

Angelman Syndrome: Close to a Cure?

2011-06-09T15:30:00.001-05:00

Angelman Syndrome: Close to a cure?

By Allison Louie-Garcia – Tue May 24, 4:33 pm ET

Rebecca Burdine knew something was wrong the day her baby girl was born. Sophie was born without a natural sucking reflex, making it nearly impossible to eat. Later, it became clear that she had hardly any muscle strength at all. As the months passed, Burdine, a developmental biologist from Princeton University, grew more worried about her daughter's poor sleep patterns: short blocks of sleep interspersed with intense screaming fits. When she turned four months old, Sophie began having seizures, sometimes as many as three an hour.

The first time Sophie suffered an Absence seizure, also known as a "petit mal" seizure, Burdine had no idea what was happening: "It was like watching TV when suddenly the screen turns to static, and then the channel comes back like nothing ever happened," she says.

Several months later, Sophie was diagnosed with Angelman Syndrome, a genetic disorder marked by severe developmental delays, sleep disturbances, and oftentimes seizures. Actor Colin Farrell recently sparked interest in this relatively rare condition when he spoke publicly about his 7-year-old son James' diagnosis on the Ellen DeGeneres Show. The Irish actor discussed how his son's seemingly always happy demeanor and intense fascination with water caused James' pediatrician to test him for Angelman. As of last week, searches for Angelman Syndrome has spiked on Yahoo! , at one point becoming its third most trending topic.

According to Burdine, the newly renewed interest in the disease could not come at a better time, as researchers are on the brink of finding a cure.

"The dogma used to be that if you were born with a developmental disorder … that was it," said Dr. Paul Lombroso, director of the Laboratory of Molecular Neurobiology at Yale University. "This has all changed."

Adds Burdine: "We now know the 'cards' can be re-dealt!"

As opposed to other neurological disorders like autism and Alzheimer's, which affect many different genes, Angelman Syndrome only affects one: the UBE3a gene. Because researchers can pinpoint what causes the disorder—the absence of UBE3a—they were not only able to genetically alter a mouse to mimic Angelman symptoms, but they were able to successfully cure it.

Tailoring that cure for humans is the logical next step, but funding is still needed to move forward.

"Everyone talks about finding a cure: 'We're going to cure cancer, we're going to cure autism, diabetes, etc.' But we're actually talking about a cure here," Burdine said. "What's frustrating is that the only thing in the way is money."

Burdine says that while Angelman is a relatively rare disease—affecting 1 in 15,000-20,000 births—curing it would be a gateway to finding a cure for other neurological disorders—like Alzheimer's and autism—as well as anything that affects learning and memory.

"This is a chance where someone's investment can really pay off and they can see the results," she said.

Now five years old, Burdine's daughter Sophie still can't walk or even sit up on her own. Without a chewing reflex, she is only able to eat pureed baby food. She is carried everywhere she goes, and still wears diapers. She also can't speak.

"As much as I love my daughter's smiles and her giggles, I want to get rid of the seizures; I want her to be able to eat real food; I want to be able to talk to her: simplistic things that would be profoundly important for making her life better."

To learn more about AS, and how you can help, visit CureAngelman.org.

Origninal source: http://news.yahoo.com/s/yblog_newsroom/20110524/sc_yblog_newsroom/angelman-syndrome-close-to-a-cure

Daughter Inspires Parents to Build Inclusive Park

2011-06-09T15:15:00.002-05:00

Daughter inspires parents to build inclusive park

Inspiring Kelly Meissner plays with her daughter Kate, who has Angelman syndrome, at their Elmira home, Thursday.

Mathew McCarthy, Record staff

ELMIRA — Kelly Meissner decided she needed to do something good with all the anxious energy after her baby daughter was diagnosed with a severe genetic disorder, rather than getting mired in bad thoughts.

Her daughter Kate was a shining example of that positive approach.

“To Kate, she’s completely normal,” Meissner said. “She’s happy and loves her life.”

Meissner wants her daughter to be able to enjoy simple childhood pleasures regardless of her disability, inspiring her to raise money to build a park accessible to all children in the family’s hometown of Elmira.

Under the banner Kate’s Kause, Kelly and Jeremy Meissner have raised about $85,000 in a little over half a year. They hope to raise the estimated cost of at least $150,000 by next spring to have the park ready for the summer.

The play area will include equipment appealing to children of all abilities and special turf that’s easy to navigate and safe for disabled children.

Kate, who’s just shy of her second birthday, has Angelman syndrome. The rare genetic disorder causes severe developmental delays and neurological problems.

Limited speech, sleep disorders, and trouble with movement and balance are common symptoms.

While there’s no specific therapy for the syndrome, medical treatment is usually required for seizures. And various forms of therapy, including physical, occupational and communication therapy, can help a person develop as many skills as possible.

“It’s a pretty upsetting and severe diagnosis,” Meissner said.

Kate’s parents noticed in her first few months that she was lagging behind other children and not reaching such milestones as crawling, sitting and eating solids when expected. Meissner researched possible causes, but that didn’t prepare her for the doctor’s prognosis last summer.

“We were pretty shocked, but she’s still our girl, so we’re trying to do our best to cope,” Meissner said.

Life with a disabled child can be difficult, and the Meissners grieved about losing the future they had imagined for their daughter and family. Meissner still finds it tough knowing Kate will probably only ever say a few words.

“It’s those little day-to-day things that are the hardest for me,” she said.

But she said they’ve also learned valuable lessons from Kate. One life-changing realization came when the Meissners, including Kate’s older brother Jamieson, enjoyed a day at Marineland like any other family.

“It’s not so bad to be special,” Meissner said.

Kate is a fighter who struggles, but keeps working to do ordinary things like crawling and sitting. Once she learned how to crawl on her belly earlier this year, she hasn’t stopped and now she’s crawling on all fours.

“She hardly sits still anymore,” Meissner said.

Every little accomplishment is celebrated. Seeing her progress, helped in part by physical and occupational therapy a few times a week, Meissner is hopeful that one day Kate will walk.

“She’s on Angelman time. She just does everything slow and on her own schedule,” she said.

The couple is determined to treat Kate like any other child, encouraging her and pushing for her to be as integrated as possible. Next fall, Kate is starting at the local preschool.

They want other children and families to appreciate Kate for who she is, too, which drives their efforts to build the inclusive park.

Meissner imagines children of all abilities playing together, just being kids. There she knows Kate will enjoy every minute.

“All she wants to do is live,” Meissner said. “She’s just so happy living.”

Find out more at www.kateskause.com. Kate’s Kause is a finalist in the Keg restaurant’s Thanks a Million contest, awarding $25,000 grants to community projects. Vote at www.thekegthanksamillion.com until June 14.

jweidner@therecord.com

Link to article: http://www.therecord.com/news/local/article/544504--daughter-inspires-parents-to-build-inclusive-park

Tommy's Dad, FAST, and Colin Farrell...

2011-06-05T16:54:00.011-05:00

This is a post written by Mike Ross, dad to Tommy Ross. Tommy had Angelman Syndome, and left this earth at the tender age of only 5 years old, due to complications from seizures. Mike, dedicated to his son Tommy, "has a dream about seizures being cured". He runs a group on Facebook, called Suck Feizures (Stop Seizures Now).

I am putting the text of his most recent post here, but please visit his blog and read more about his fight at Stop Seizures Now. Here is the text of his blog post titled Foundation for Angelman Syndrome Therapeutics: FAST-Colin Farrell's in the House.

There are so many people in the Angelman Syndrome family, that are hoping for a cure, to this condition that is caused by a deletion of chromosome 15. While angels are a joy to live with, due to their magnetic, happy personalities, infectious smiles, and laughter, it would benefit them and their loved ones when that medical breakthrough is discoverd. Notice the "when" and not the "if," because that is for a reason, as the work of Dr. Edwin Weeber and others, with animal projects have proven that Angelman Syndrome can be created and cured at the genetic level. Ten years ago, "if" would have been appropriate, as some of the most intensive research has taken place in the past couple, due to the dedication of doctors and groups like FAST. For those of you whom are not familiar with FAST, it stands for Foundation for Angelman Syndrome Therapeutics. Based out of Illinois, and run by an all volunteer staff that are all parents to a boy or girl with Angelman Syndrome, they've got the passion and the decency to never give up.

It is too late for my son Tommy, who sadly passed away from a seizure related to Angelman Syndrome in 2009. This is the same story for other parents of Angels, who miss their little ones, more than mere words on a blog could express. Yet there are thousands of parents and family members across this globe, which is becoming smaller everyday, that hold out the hope for a cure for Angelman Syndrome, which causes major developmental delays, such as those related to mobility and speech. FAST offers a chance for these parents, as the organization is broken down into a Board of Directors and Scientific Advisory Board. This unique partnership, along with its volunteers, makes it an "effective machine," for new possibilities, including the cure that's around the corner if the necessary funding can be discovered. When you think about the cost versus what it would mean to parents and children everywhere, it is a "drop in the hat," and I cannot stress enough the importance of donating to FAST whatever you can.

Funding goes to help discover new treatments for the cure of Angelman Syndrome, along with helping angels get better medical care. That is the proverbial "win win", and the passion that FAST has cannot be denied. Parents of angels are running races, generating community events, all to help out this efficient organization. Even Colin Farrell, whose son has Angelman Syndrome, has chosen to work with FAST because of this level of dedication. For more information, go to their internet address athttp://www.cureangelman.org/. There you will see a group that is committed to a cure, and you can reach them at 1-866-783-0078. Look at their site, and I am sure that you will be impressed by their endeavor, because a cure for Angelman Syndrome is a reality.

Please visit and donate!

Also, if you want to help Mike in his fight for seizures and his work with the Vanderbilt University's Kennedy Center Angelman Syndrome Program, you can purchase a SUCK FEIZURES, Tommy Collection shirt , and $4 from the sale of every shirt will go to Vanderbilt's program.

Love one another~Yvonne

FAST and the Vivint Gives Back Project; WHY Vote for FAST?

2011-05-31T09:45:00.058-05:00

The video above is featured in THIS ARTICLE from Yahoo News. We are very lucky to have Bryan Thompson, Finn's father (Finn has AS), who works for Yahoo, and advocated tirelessly for FAST and our children, on our side. Bryan was the driving force behind this Yahoo article and the featured video. The video features Bryan and his wife Tina and their son Finn, Rebecca Burdine and her daughter Sophie and last but not least Dr. Edwin Weeber, our rockstar AS researcher!

The FAST newsletter has just come out again, the May, 2011 edition, and there was tons of exciting news in it. "Dr. Weeber's Neurobiology of Learning and Memory Laboratory has started testing specific drugs. One of these drugs provides significant improvements to the AS mouse in terms of motor coordination and brain function. These results represent the first time a pharmacological agent has rescued the defect in neuronal function in a living Angelman Syndrome mouse. More updates to come as experiments continue!!!"

Wouldn't it be great if FAST had another $250,000 for research??? Well, they can, but not without YOUR HELP! Vivint is my home security company, and I nominated FAST in the Vivint contest on April the 27th, and we are now #1 in our region!!! Go to the Vivint Gives Back Project page for FAST <--- (click there) EVERY DAY and vote! Voting ends on August the 27th. If you find yourself having problems figuring out HOW to vote, click HERE and it will take you to the previous blog post, that has detailed instructions.

FAST spends 100% of all outside donations on RESEARCH!!! That means 100% of the $250,000 WILL go to RESEARCH that WILL move us toward REAL therapeutic treatments and ultimately a CURE!! It WILL help my son, Joshua, and others with AS, to be SEIZURE FREE, to have the ability to WALK, and the opportunity to SPEAK OUT LOUD!!!

PLEASE VOTE!!! It means the world to our family!!! A vote for FAST is a vote for JOSHUA!! ;-)

Love one another~Yvonne

A CHANCE TO HELP F.A.S.T. WIN $250,000 FOR AS RESEARCH!!!

2011-05-10T16:00:00.009-05:00

FAST has an opportunity to win $250,000 from Vivint. Company (formerly APX) in their Vivint Gives Back Project. They will be giving away $250,000 to the grand prize winner and (5) $100,000 prizes to the top in each region in their current competition on Facebook. Their employees raised the money and now they want YOU to help them decide where and to whom it should go. This competition is all conducted in FACEBOOK and has two phases.

Here is the link for the Facebook event page: http://www.facebook.com/event.php?eid=188492087863434

Phase 1- Vote every day for FAST in the central region from April 15 – June 11th.

On June 12th the top 20 organizations in each region will move into Phase 2.

Phase 2- Voting begins June 14th – August 27th. VOTE EVERY DAY!! If FAST is number one in the nation at that time we will win $250K. If we do not win that, but are top in our region, we will win $100K. This is a VERY important competition and we need everyone to vote for the sake of the children!!! Vivint will also have a matching donations time period in phase 2. During this matching time, you donate $50 and Vivint will match your $50 up to a total amount of $2500.00. This means another $5000.00 for us! Watch for the matching time periods and donate $50.00 (forgo 2 pizzas and some pop and you have your $50!!)

The first time you vote is rather difficult. Please feel free to e-mail Yvonne Hamrick at 4hamricks@gmail.com and I will walk you through the process.

The second and subsequent times you vote is VERY EASY and requires about 30 seconds of your time. Please follow the steps outlined below and GO VOTE! THANK YOU SO VERY MUCH!!!

FIRST TIME VOTERS:

Log into Facebook and:

First go to Account > Privacy Settings > Connecting on facebook> Blue letters “View Settings” and make sure your “Likes and Activities” are set to “Everyone” (Last category on that page)

Then go to: www.vivint.com/givesbackproject and click on “Log in” upper right corner. You may or may not have to select “Allow”.

Then, scoll down and find the thumbs up symbol. Underneath it you should see a blue “Like” symbol. Click on Like.

Then, scoll down to “Top Charities” click on it and then:
Click on “Central” region
Click on “FAST”
Click on the orange “Endorse” button

If you did it correctly you will receive a “success” message.
You can then post it to your wall by clicking on the facebook symbol.

SECOND TIME VOTERS:

Log into facebook and go to:

http://www.vivint.com/givesbackproject/charity/43

If the "endorse" button is GREY and not ORANGE, you will get a pop up saying you need to log in first and you either need to

(a) log in to facebook through the link at the top of the page (clicking on the pop up just takes you back to the page), or

(b) if you are already logged in, wait a moment until the page finishes loading, at which point it will recognize you and the endorse button will turn orange.

Quote of the day...

2011-03-30T19:22:00.001-05:00

Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid. ~Albert Einstein

The Many Faces of Joshua in 2010

2010-12-22T14:09:00.001-06:00

MERRY CHRISTMAS!

2010-12-21T13:25:00.002-06:00

Joy Love Story Holiday

Create photo new year's cards with Shutterfly.

View the entire collection of cards.

Walking...

2010-12-19T16:25:00.000-06:00

Joshua is so very, very proud of himself. He really wants to walk SO badly, it's the darn balance disorder he battles with, but he keeps trying every day. He works so hard. I really believe this WILL be the lucky walker for him. Another mom, who has a daughter with Angelman Syndrome, gave us this walker. Her daughter, Erinn, learned to walk using it. I've never seen him take to a piece of equipment like this before. He does somewhat like his gait trainer, BUT the problem with it is that he still leans forward so much of the time in in, and he can sit and coast in it! He also can't just sit down while in it, say on the floor if he goes over to others who are playing, and they sit down, he is still strapped into the gait trainer. With this walker, a Kaye Reverse Walker, he can walk over to something/someone and then decide to sit down, and then get up and go again.

Joshua also, will NEVER usually hold onto anything! So to see him take to this, and HOLD the handles like he does, is truly amazing. The only things he will normally hold onto, are things that he is bringing to his mouth to chew on, or toys to bang something with! It has to be useful to him. So I'm just beyond amazed! ;-)

He usually PREFERS to only use *me* as his mobility partner. I will keep updating, I am beyond excited!!!

Love one another!~Yvonne

A Social Network Christmas

2010-12-17T14:08:00.000-06:00

The story of Joseph, Mary and the conception of Jesus, the visit to cousin Elizabeth and her husband Zechariah, and birth of the John the Baptist...as told through status updates and wall posts on Facebook. I thought this was very creative and well done!

Thank you Western Beef!

2010-12-14T22:51:00.002-06:00

Foundation for Angelman Syndrome Therapeutics (FAST) Makes Great Strides in Driving Awareness and Raising Research Funding

Click the above article to read about the astounding support that Western Beef is giving to FAST. Please support Western Beef if they are in your area. If you are a parent, grandparent, sibling, aunt, uncle, cousin, or just a fan of a child with Angelman Syndrome, this is such a wonderful blessing to us all!!

As you can see from the article the partnership with Western Beef, via the Castellana family, is an unprecedented effort to assist the Foundation for Angelman Syndrome Therapeutics in raising the desperately needed funds to further vital research.

Imagine a day when our children will never again suffer from seizures. Imagine a day when each can walk, not needing their wheelchair/walker. THEN Imagine a day when another child born with Angelman Syndrome will never experience seizures, when NO Angelman child will ever again be forced into a drug induced coma just to stop the seizures that ravage his/her body, or have to experience the physical struggles and sleepless nights.

Because of people/companies, like Western Beef, this CAN happen! It just amazes me that someone that has no connection to Angelman Syndrome, does something like this. We are such a little known syndrome, but people like this really give me so much hope; hope for a CURE!

Love one another!~Yvonne

Just some fun...

2010-12-12T22:30:00.003-06:00

FAST Gala

2010-12-12T22:04:00.003-06:00

Hubby and I, with Colin Farrell, at the 2010 FAST Gala (Foundation for Angelman Syndrome Therapeutics)
Here is a link to the slideshow from the FAST photographer taken before and during the Gala.

Angels on Earth

2010-12-08T11:33:00.005-06:00

My dear friend, and "Angel" mama, Kelly Ellison, has started a new business. Angels on Earth is her new online store. You will find the coolest Angel t-shirts I've ever seen, in men's, women's and children's sizes.

Kelly also has Angels on Earth coffee mugs, Angel earrings and necklaces. You can also purchase Angels and Idols, a fabulous book written by "Angel" dad and songwriter, Regie Hamm.

Liquid melatonin is also available, for those who have sleepless nights with their AS kids! Kelly is dedicated to raising awareness for Angelman Syndrome!! New products will be added all the time that are useful for our kids and "parent reccomended"!

Kelly's little "angel" Kiano

The Angelman Syndrome awareness video that Kelly made:

Story of the Winfreys and their special needs child, Ian, who has Angelman Syndrome

2010-11-10T13:38:00.000-06:00

Winfrey's Story from Jonathan Whitney on Vimeo.

BEAUTIFUL testimony!!!!

Danny Gokey & more at Bella Bash

2010-11-10T13:16:00.003-06:00

Danny Gokey & more at Bella Bash- for Regie Hamm\'s cause from Nashville Country Club on Vimeo.

Click this link to find out more about the Bella Bash!

The following is taken from the website:

Founder: REGIE Hamm

In 2003, Yolanda and I flew to China and adopted our first child. Her name is Isabella Xin Meng Hamm and she is our heartbeat. We didn’t know it when we adopted her, but Isabella has a rare genetic disorder known as Angelman Syndrome. That means she is missing a tiny piece of her 15th maternal chromosome. Isabella can’t speak, bathe herself or respond to most verbal commands. She needs 24-hour monitoring to be able to function.

In the last three years, since we received Bella’s diagnosis, we’ve met some amazing people doing amazing things in the world of special needs therapy. This year we’ve formed the “Angel Wings Foundation.” This foundation will be dedicated to providing therapies and support to the most profoundly challenged of those with mental disabilities. Our long-term goal is to ultimately have an “Angel Center” here in middle Tennessee, which would be a comprehensive therapy and diagnosis center for all of those who are battling the most confusing disabilities, from Autism to Angelman Syndrome. We’re partnering with The Vanderbilt Kennedy Center to make that dream a reality.

For the past three years we’ve held something called the “Bella Bash” here in Nashville, a night of music and laughter that not only raises much needed funds but also awareness of Angelman Syndrome and all the other rare disorders that are in the shadows, (often being misdiagnosed as Autism). We want the Bella Bash to be a celebration of joy and hope and a great night out for some tired families who need to know they’re not alone in their struggle. The night will feature world class music as well as great comedy. When you leave the Bella Bash we want you to feel refreshed, renewed and ready to take on the rest of the year. Proceeds from the Bash go directly to the Angel Wings Foundation and that helps people like Louie Bichell, Rachel Pillow, Elizabeth Hathaway, Isabella Xin Meng Hamm and countless others learn how to communicate and expand their horizons far beyond anything they or we’ve ever dreamed!

We invite everyone to come out, have some fun, eat some food, listen to a great jam session, laugh, connect, enjoy and ultimately contribute your time to a great cause.

- Regie

My little cute kid winning, cover model! ;-)

2010-11-08T21:10:00.002-06:00

Joshua is in the Connections "The Special Needs Kids Directory" Fall edition!!!! There is a great story about him and Angelman Syndrome on page 16!!!!

He is on the cover, and there is a FANTASTIC picture of he and his big sissy, Caylee, on page 18 with the article!

Thanks Connections!

Water boy...

2010-11-08T20:53:00.001-06:00

Love this picture! It never ceases to amaze me how much JOY Joshua gets, from just a splash of water! I could watch him play in it all day, every day.

Emma Eberhart: A story of acceptance and sportsmanship

2010-11-05T17:11:00.001-05:00

Hipperbibs: Where Drool Is COOL!

2010-11-05T15:40:00.001-05:00

My friend Susan, created the Hipperbib (click to visit site).

The creation of the Hipper Bib was designed for my son Ian.

Ian is 5 years old and is diagnosed with Angelman Syndrome which causes Ian to drool. After searching for special needs bibs, drool bibs, and fashionable bibs, I decided to come up with a unique bib that had all of these features. I wanted a bib that would compliment his clothing and in turn would not draw attention to the fact that he was wearing a bib therefore, maintaining his since of dignity.

Here is a slideshow that Susan created, with all of her BEAUTIFUL Hipperbib models!

Colin Farrell To Give Celebrity Support To Charity Gala

2010-11-05T15:30:00.001-05:00

Colin Farrell To Give Celebrity Support To Charity Gala

The Pretty Simple World of Angelman

2010-11-03T19:16:00.003-05:00

Pre-Order the 2011 Calendar of Angels!

2010-11-03T16:36:00.001-05:00

The 2011 Calendar of Angels!!!

"Containing over 220 beautiful, smiling faces and inspirational messages, the 2011 ASF Calendar of Angels is the perfect holiday gift to inspire, delight and spread awareness about Angelman Syndrome. Expected shipping date is mid-November. The cost of each calendar is $10 plus shipping and handling. All proceeds benefit the Angelman Syndrome Foundation.

The ASF wishes to extend our gratitude to all of our Angelman families for sharing and contributing your beautiful photos and messages that are included in the 2011 Calendar of Angels. We also extend a huge thank you to John Heinzmann, father to Andrew (AS+), for his passion and devotion for all of his time and hard work in designing the calendar and coordinating the printing and logistics of the 2011 Calendar of Angels. Thank you all for making the 2011 Calendar of Angels a tremendous success!"

~Quote from the ASF

Hear What I Am Doing

2010-11-01T18:38:00.004-05:00

HEAR WHAT I AM DOING

Please, mom,
hear what I am doing;
see what I am saying.
The world is a crazy, confusing, scary place for me.
I can’t do the things other kids do—my body doesn’t work right.

But inside, I’m just like other kids—I need to be loved and appreciated;

I need to belong, to fit in;

I need to contribute, to be useful;

I need to be heard and understood;

I desperately want you to be proud of me.

I want to tell you my needs, my feelings, my thoughts, but they get

trapped inside me because I can't get my mouth to say the words

There gets so much piled up inside me
that sometimes it just blows up everywhere
And I know you're disappointed in me
and you get angry at me
And somehow its all my fault.
My actions speak so loudly, you can’t see what I am saying.
Yet, my actions are my saying.
My body says what my mouth can't.
I act out my feelings,
but often the acting out is such a problem that my feelings go unnoticed.
But I have no other way of telling you my feelings.

I want to cooperate, to succeed, to contribute, to feel good about
myself, but to do that I must be heard.

Please, mom, hear what I am doing;

see what I am saying.

Author: Carolyn Hunsinger
Reprinted by permissionof the author

The Gift of Words

2010-11-01T17:41:00.004-05:00

The Gift of Words: by Ursula Cranmer, AS mom
"This was made as a film-making project together with Diversity Peer Support Network."

FUNNY Family!

2010-11-01T12:27:00.000-05:00

Video of Joshua cracking up because his daddy put some glasses on, he doesn't wear glasses, and Joshua finds it HILARIOUS! Sissy joins in too!

M.....More!

2010-11-01T12:24:00.004-05:00

Joshua is now consistently using his m sound for more! Sometimes it even sounds like the word more! I truly could watch him do this all day long, it's so exciting! :-)

Love one another!~Yvonne

Daddy catching our Angel...

2010-09-25T22:15:00.002-05:00

GREAT idea for a water play table!

2010-09-12T07:34:00.000-05:00

Water table, from I Make Stuff.

I just LOVE this idea! We could actually make it to fit Joshua's very tall height, a reason I have not bought any of the pre-school water tables! Going to get Hubby busy this week, while he is on vacation! ;-) I will definitely implement her idea of the hole at the bottom, with a water stopper, for easy draining and changing of the water.

Love one another!~Yvonne

Teaching the Alphabet

2010-09-12T07:14:00.004-05:00

I love these fun play-dough mats that you can print out (the link is a pdf file). (Here are more ABC activities from the same site, Alphabet Resources) I love that it has a colorful picture of an object that begins with each letter, AND the upper and lower case of each letter! So many things only have one or the other of the letter case. You would want to print these on cardstock, and laminate the pages, and then your could have your child/children roll their play-dough into long snakes (a great fine motor activity) and lay them into the outlines of the letters. You could also use vis-a-vis markers or maybe something like these, Crayola 8ct Dry Erase Crayons Large Size, to work on tracing skills also. I found the link to these pages at this blog, it's a very cool Montessori style teaching blog. I love the Montessori way of teaching pre-schoolers. I love that it incorporates so many motor skills activities that the pre-school age needs to work on.

My son Joshua, who is 6, and has Angelman Syndrome, struggles with large and fine motor skills. I can find so many ideas, in the Montessori teaching style, that I can use to work on those skills with him. I need to do ALL activities with him using HOH (hand over hand), it takes a lot of repetition for his brain and hands to get on the same page. He KNOWS exactly what he wants his hands to do, but his arms and hands just don't cooperate with his brain. It is super frustrating for him, but he works SO hard, and doesn't give up! He is a such a fighter and I am always inspired by him, and he doesn't give up just because it's hard, but he keeps on trying over and over, AND he does it with the best attitude! I can, and do, learn a lot from him everyday about perseverance, and doing it with a happy heart! He is such a living example to me daily of Philippians 4:13: I can do ALL things through HIM who strengthens me.

Love one another!~Yvonne

Joshua and the Motorcycle

2010-09-02T01:27:00.001-05:00

You haven't seen a kid who loves motorcycles until you've seen MY kid who loves motorcycles!!!

We are forever trying to find motorcycles when we are out driving around. We actually go for drives on the weekends, just to find them. This one kept us truly amused on our trip home from Galveston yesterday! It passed us once and Joshua squealed with delight. Well, we've always wanted to get his reponse on video, so...Hubby takes off weaving through traffic after this motorcycle, with Caylee and I cheering him on. It was quite the chase! We finally got past him, so that he could again pass us, and we could roll Joshua's window down and wait for the response! :-) It was GREAT, and so much fun. Some days when it's nice out there are so many out for drives, and he is such an ecstatic little boy! Of course, we enjoy his response just as much as he enjoys the motorcycles!!

It's the little things in life, ya know?

Love one another!~Yvonne

Alphabet Therapy

2010-08-28T13:02:00.001-05:00

This is a video of a 5 year old little girl, named Rylee, with AS, in a session with Fae Lumauag, from The Vanderbilt Kennedy Center, Alphabet Therapy Program.

We are hoping to bring Fae to Dallas, sometime in the near future, to work with our local families! What a great opportunity!!

Rylee's daddy, Ryan, wrote a book called Jade and the Walking Stick it's a fabulous little book! A snippet of the book summary: Inspired by the story of a young girl with Angelman Syndrome, Jade and the Walking Stick is a fantastical tale of a special needs child coping with the challenges in her life. Written for the author's daughter, the book symbolizes the developmental milestones common to special needs children through a fantasy fiction narrative. A fable of acceptance and triumph, Jade and the Walking Stick should inspire others to face all of life's challenges with a smile.

Love one another!~Yvonne

Whip'em out! It's what your knockers are for!

2010-08-26T22:15:00.003-05:00

LOVE this! In our area there are some pretty awesome breast feeding commercials on the radio right now too! I love them. I hope they are making a difference in changing the minds of some whose minds had been closed to the idea before. I know there were people in my own family who thought I was some hippie weirdo for breast feeding Caylee 17 years ago. LOL!

EWG's Shopper's Guide to Pesticides

2010-08-18T09:53:00.004-05:00

Download this guide to the "Dirty Dozen" and the "Clean Fifteen"

Why Should You Care About Pesticides?

The growing consensus among scientists is that small doses of
pesticides and other chemicals can cause lasting damage to human
health, especially during fetal development and early childhood.
Scientists now know enough about the long-term consequences of
ingesting these powerful chemicals to advise that we minimize our
consumption of pesticides.

What’s the Difference?

EWG research has found that people who eat five fruits and
vegetables a day from the Dirty Dozen™ list consume an average of
10 pesticides a day. Those who eat from the 15 least contaminated
conventionally-grown fruits and vegetables ingest fewer than 2
pesticides daily. The Guide helps consumers make informed choices
to lower their dietary pesticide load.

Will Washing and Peeling Help?

The data used to create these lists is based on produce tested as
it is typically eaten (meaning washed, rinsed or peeled, depending
on the type of produce). Rinsing reduces but does not eliminate
pesticides. Peeling helps, but valuable nutrients often go down the
drain with the skin. The best approach: eat a varied diet, rinse all
produce and buy organic when possible.

How Was This Guide Developed?

EWG analysts have developed the Guide based on data from nearly
89,000 tests for pesticide residues in produce conducted between
2000 and 2008 and collected by the U.S. Department of Agriculture
and the U.S. Food and Drug Administration. You can find a detailed
description of the criteria EWG used to develop these rankings and
the complete list of fruits and vegetables tested at our dedicated
website, www.foodnews.org.

THE POWER OF INFORMATION
Headquarters 1436 U St. N.W., Suite 100 Washington, DC 20009 (202) 667-6982

Learn More at FoodNews.org

Joshua SWIMMING!

2010-08-17T22:47:00.003-05:00

Joshua has just recently begun to swim in the pool, with only a floatie around him. I am so happy for him, and for us! ;-) The freedom is amazing, for him and for us! ;-) He twirls around and around and swims from one side to the other, chasing kids or toys. The pure joy is so evident on his face. The first couple of times he did it, I think he was truly amazed and so proud of himself. I love my Honey Man! Enjoy a picture and video from today's swim!

P.S. I think he may have swimmer's ear. :-( Will be calling the pedi in the morning to get it checked out.

Love one another!~Yvonne

This is beautiful...

2010-08-17T13:47:00.005-05:00

I LOVE this!!!!! Way cool! I will never, ever forget the first time I did something "alone" I went to the mall, all by my lonesome, around the age of 19. It was strange at first, but then I realized that I loved it. I just had to learn to be comfortable with myself. A week later, I then went to a movie. I was really digging it. ;-)

Love one another!~Yvonne

Joshua LOVING The Wiggles!

2010-08-07T11:34:00.002-05:00

It was such a HUGE blessing to be able to take Joshua to see his favorite group and to watch him enjoy it so much! My heart felt so full of love and thanksgiving, watching him. He sat for a full 2 and 1/2 hours, completely mesmerized!

We not only got to watch the show, but also got to meet The Wiggles and have our picture taken with them. Joshua wasn't too thrilled about the picture at the time, he wanted to visit with the guys, and instead we were having him turn away from them and look at the camera! He didn't find that to be the best use of his short time with them. I kind of agree, but I'm glad that we have it, and he did enjoy looking at it last night. :-)

I also bought Joshua the PERFECT shirt!

All in all a VERY good day!

Love one another!~Yvonne

Joshua and Johnny Joe

2010-08-04T11:09:00.002-05:00

Choco-Cherry Oats and Chia Breakfast Cereal

2010-07-26T12:40:00.004-05:00

Made this recipe up this morning and it was a huge hit with the kids and myself. Joshua ate all of his, and then screamed for MINE! ;-)

I have finally figured out the right ratios of oats/seeds/water, so that I can post the recipe!

In a bowl combine:
1 cup of oats
5 tbsp of chia seeds
2 2/3 cup of water

Stir it once, and then again after about ten minutes. You are then going to let this sit overnight, in the fridge if you like, I just leave mine on the kitchen counter, covered, so that it's not so chilled when we eat it.

Topping:
20 cherries, pitted
2 tbsp of raw coconut butter (I use the Artisano brand and get it at Central Market)
2 tbsp of Nutiva chocolate hemp protein powder
handful of pecans (you can use any nut you like)
agave to taste preference

Put all of this in your food processor and blend it on the pulse mode, so the cherries are still a bit chunky.

Scoop oat/chia mixture into a bowl and add topping mix, and close your eyes and enjoy! It's heavenly!

Love one another!~Yvonne

Hot Raw Chef Contest

2010-07-25T22:40:00.003-05:00

It's too late to vote for the Hot Raw Chef, but thought you may be interested in watching all the video entries still. Wow, there are so many delicious looking recipes that were entered. The winner will be announced on July 27th, only 2 days away. I wonder who will win?!?

Linky Loves...

2010-07-06T13:11:00.004-05:00

We LOVE this song! It's SO upbeat, so fun, so engergizing!!! Give it a listen!

I love this artist's body art!

Love this paper art pendant. So very cool! Caylee is OBSESSED with the J.M. Barrie story of Peter Pan, she wants this quite badly. She said, in her finest english accent, "I will wear it to all of the finest occasions!". ;-) Love my girl! She is so fun!

Love this recipe of Coconut Boi's, for Raw Chocolate Fudge Cake and Raw Cake Decoration. I cannot wait to make this, and I will as soon as my Pacari Truly Raw Cacao Powder gets here! We just used the last of our Cacao powder this morning, in Caylee's banana, peanut butter, Cacao smoothie!

Off to do my zillion errands today!

Love one another! ~Yvonne

Honey Ginger Smoothie

2010-07-02T20:02:00.005-05:00

I was given this recipe from a woman today, it's truly yummy, and so refreshing! Thanks to Renata. ;-)

Renata says it's a great recipe for getting things moving, if you know what I mean. Which I have needed help with. I have been having pretty much green smoothies only for 12 days now, and was wondering why things weren't moving the way they should. She suggested that I may be getting too much fiber, not enough water? Could be. Also, that sweet and spicy, help to get the liver producing bile, which helps get things moving. I had no idea! Great information! I will be much more conscious of how much water I'm taking in this week and see if that makes a difference.

1 whole honeydew melon
chunk of fresh ginger, I like a LOT of ginger
2 bananas
some raw honey to sweeten
3 cups of water
ice to chill

Blend it all up and enjoy!

Love one another!! ~Yvonne

2010-06-28T19:06:00.001-05:00

Testing the mobile feature. :)

The low-down on Chia Seeds, and my Chia crackers!

2010-06-27T18:29:00.004-05:00

They definitely aren't just for growing Chia Pets!

Check out this article on Chia, in Raw Food World, where you can also purchase these lovely little seeds. Such great information! I had NO idea that the teeny tiny Chia seed was such a powerhouse of nutrients!!! VERY cool!

I have some raw chia crackers in the dehydrator right now!

Here is the mixture in the bowl:

I just grab some out of the bowl with my hand and smooth it out:

Here it is ready to go into the dehydrator:

In the dehydrator, ready for temp 105 degrees Fahrenheit:

Here is the brand dehydrator I have:

I'll be able to flip them over in a few hours, and then they will be ready tomorrow for some yummy guacamole and salsa!

Thought I would post a picture of the finished product! They are so good!

Love one another!~Yvonne

My 40's glamour girl...

2010-03-28T19:21:00.005-05:00

My daughter was in a 40's themed wedding yesterday, Joshua's aide Tiffany got married! Here are a couple of photos I took of her outside after the wedding. I used Picnic to change them to a sepia color. I just loved the hair and make-up!

Just a swingin' ...

2010-03-24T19:41:00.002-05:00

He loves this swing! Joshua craves constant movement, so swinging is not only FUN, but important! ;-)

Freedom is awesome... (gait trainer 2)

2009-10-28T11:09:00.003-05:00

Photo and video editing at www.OneTrueMedia.com

The song is one we sing all the time in our family. It is so sweet!! It is based on a Sandra Boynton book, and sung by Davy Jones, of The Monkees. I love Davy!

Freedom!!!!!

2009-10-28T10:40:00.002-05:00

Josh, loving his new gait trainer!

For: Special Exposure Wednesday.

Love one another,
Yvonne

New gait trainer (gait trainer 1)

2009-10-23T11:17:00.000-05:00

Photo and video editing at www.OneTrueMedia.com

Joshua trying out his new Kidwalk, at PT, for the first time. I think it's going to be a great fit for him!

FAST hosts "An Evening With the Stars"!

2009-10-03T16:36:00.004-05:00

News source

Foundation for Angelman Syndrome Therapeutics website here.

October 2, 2009

FAST, The Foundation for Angelman Syndrome Therapeutics, will host an “Evening with the Stars” on Saturday, December 5, to benefit research toward a cure for the rare neurological disorder, Angelman Syndrome (AS).

Gala attendees are set to include actor and Golden Globe Winner Colin Farrell and singer/songwriter Regie Hamm, both of whom have been touched by AS through the diagnoses of their children. Hamm, who won the 2008 American Idol Songwriter competition, will also perform his hit, “Time of My Life,” which became a smash hit single for Idol winner David Cook.

An evening of fun and entertainment, attendees will enjoy a cocktail reception, four-course dinner, dancing and silent auction; sponsored in part by FAST corporate sponsors LexisNexis and Innovative Mag-Drive. The proceeds raised throughout the night will be donated for research dedicated to finding a cure for Angelmen Syndrome, a disorder that is often misdiagnosed as autism, cerebral palsy and/or mental retardation.

“We are excited about the progress we’ve made in helping to find a cure for Angelman Syndrome,” said Paula Evans, founder and chairperson of FAST. “Because this disease is so often misdiagnosed, it’s important for us to raise awareness and funds to continue the great strides we’ve already achieved. We hope to surpass last year’s success with yet another fantastic evening.”

“The families involved with FAST have created a strong support network while tirelessly assisting those dedicated to finding a cure. I’m extremely proud to support such an inspiring organization,” said Farrell.

FAST will kick-off the evening at 6:00 p.m. at the Hyatt Regency Chicago located at 151 East Wacker Drive in Chicago. Individual tickets are $150 or a table for ten can be purchased for $1,500. For more information or to purchase tickets, corporate sponsorships or program advertising, please visit www.CureAngelman.org.

Family bowling night was a blast!!

2009-09-06T15:25:00.002-05:00

This was Joshua's second time to go bowling, and he definitely knew what to do this time! As soon as I got him out of his wheelchair, he started heading towards where the balls are! He has a definite preference for pink bowling balls, which is funny, because he doesn't show this preference for pink anywhere else.

We went out to eat before bowling and I got the BEST shot of Joshua and his Daddy, Kevin.

Hopefully there will be LOTS of bowling in our future with both of our kiddos!

"HAAAAAAAAAH"!!!

2009-09-03T21:44:00.003-05:00

Joshua said hi to someone yesterday!

Joshua, Caylee and I were taking a walk yesterday. We were all enjoying the beautiful weather we have been blessed with lately. I saw a couple walking toward us, and I said to Joshua 'Joshua, say hi the people walking', and when they got closer to us he said 'HAAAAAAH' to them!!!!! It was so cool! I have not ever thought to say that to him before, and I am so glad that I did!

He was so happy also, because the couple looked at him, and smiled and said 'hi' back! So cool!!

Joshua never fails to surprise me!!! Way to go Pooh Bear!!!

Offense Taken!

2009-07-01T09:43:00.003-05:00

Exceptional Parent Magazine

2009-06-28T10:35:00.003-05:00

Check out the digital version of Exceptional Parent Magazine. It has so many great articles for parents of children with an array of disabilities.

If you are out of the country, United States, it is delivered in a digital format, no shipping charges!!

Hibiscus tea and Chia seeds...

2009-06-07T15:49:00.004-05:00

I was recently introduced to hibiscus tea, and really love it. I found a good site to order it; organic and bulk: Edible Nature. I also found organic bulk Chia seeds from them.

I was interested in finding out what sort of health benefits hibiscus tea has and found out that it has been known to reduce blood pressure, blood cholesterol, and is very high is vitamin C. All good stuff! I, fortunately, don't have to worry about blood pressure or cholesterol, my blood pressure is usually too low!

Take a look at the link above for chia seed health! It's a power packed little seed, that can replace flax in any recipe and it does not need to be ground. Dr. Weil has an article about it in Prevention magazine. I have a raw chocolate dessert recipe book that has quite a few recipes in it that include the healthy chia seed. I love healthy chocolate!!

Enjoy reading the links...

Just throwing in this vitamin chart I find helpful!

Everyone, and I mean everyone, should read this!

2009-04-15T00:02:00.009-05:00

Outing the Prejudice: Making the least dangerous assumption
By Zach Rossetti and Carol Tashie

People with disabilities are people first. Because of the presence of a disability, a person may act, get around, look, dance, smile, read, learn, show what she knows, or communicate differently. The key here is that this is a difference and not a deficiency. As humans, we are all alike only in that we are all different. The fact that society tends to create a hierarchy of these differences, by labeling some of them deficiencies, is a manifestation of an out-dated paradigm plagued by prejudice. This inherent prejudice against people with disabilities means that some differences will be defined as deficiencies and looked down upon by all of those “higher up” on the social ladder.

What makes this even worse is that most people do not even recognize this prejudice. It is disguised as compassion and justified as “help.” The segregation of people with disabilities into “special” classrooms and separate lives is justified by this paradigm of deficiency. Too many people continue to believe that, “since they do not look or act like us, they must not be as good as us.” This way of thinking needs to be outed, challenged, and changed in order for all people to be valued just as they are.

Anne Donnellan, in her book Movement Differences and Diversity in Autism- Mental Retardation: Appreciations and Accommodations People With Communications and Behavior Challenges (1994), identified why this old paradigm was not sufficient and needs to be replaced by a more humanistic and respectful one. The key to the new paradigm is the concept of the “Least Dangerous Assumption.”

“Least dangerous assumption” states that in the absence of absolute evidence, it is essential to make the assumption that, if proven to be false, would be least dangerous to the individual. She continues by explaining that the “absence of evidence can never be absolute evidence of absence,” and as such, it is always safest and most respectful to make the “least dangerous assumption.”

Consider it this way. If I were to go fishing for a week and not catch anyfish, there would be two assumptions that could be made. First, I could say “there are no fish in the lake since I did not catch any, and I know what I am doing.” Or, second, I could say simply that “I did not catch any fish that week, and I will keep on trying.” The first assumption seems rather arrogant, while the second one is more realistic and respectful. (There is a third assumption that I could make which would be that I am not a good fisherman, but we won’t go there).The same holds true for students with disabilities. Imagine a child who does not talk with the spoken word and moves around using a wheelchair. Her teachers have worked with her for a month and have not yet seen any evidence of what she understands. In fact, they wonder if she knows or is aware of anything at all. These teachers can make one of two assumptions. They can assume that “what you see is what you get” and that this child does not know anything, that her brain is as empty as that lake. As such, they can educate her in a way that reflects those assumptions (perhaps segregated classes or regular classes with low or no expectations). Now imagine her as she graduates and uses a communication device to say, “Why did you treat me so poorly?”. I am smart and you wasted twelve years of my life!” A very dangerous assumption was made, with results that none of us would desire.

Now, consider the second assumption. These same teachers can recognize that her movement differences are differences and not deficiencies. They can assume that she knows lots and just isn’t currently able to show what she knows. Her brain is as full of knowledge and potential as that lake is of fish, but they just have not been able to reel anything in yet. As such, her schooling would reflect these high expectations and she would be considered and respected as a valued member of her school and classes. Now again, imagine her twelve years later at graduation, using her communication device to say, “Thank you from the bottom of my heart to all of my teachers who believed in me and made me feel as if I truly belonged and treated me like all of my classmates.” This is the least dangerous assumption, one that results in a young woman who can celebrate her full and fulfilling life.

But consider a third scenario as well. What if we never come up with a way for this young woman to communicate her intelligence? What if, after twelve years as a valued and respected student in all general education classes, we still do not know exactly what she has learned and knows? What harm was done? What was lost? Nothing. And that truly is the least dangerous assumption.

Understanding the concept of “least dangerous assumption” and acting on it are two different things. The idea of considering all people as capable and intelligent may not come naturally to some people due to the influence of society’s prejudices against people with disabilities. Most well intentioned adults and professionals have been taught to believe in the out-dated paradigm and, therefore, may make very dangerous assumptions about students with disabilities. Many people’s first impressions of people with disabilities are tainted by years of societal prejudice and media portrayals of what is enviable and worthwhile. While the power of these experiences is strong, we can no longer allow this to serve as a justification for the perpetuation of the prejudices against students or adults with disabilities.

The question we should all be asking ourselves is: “Do you really believe that the individual with disabilities is a valued and competent and unique person?” Think long and hard about that question. If you cannot honestly answer “yes,” then the next question is simply, “Why?” Think about your beliefs, your experiences, and the prejudice you have

been taught. Ask yourself how you can change those dangerous assumptions and mindsets. Talk with people who are friends, parents, siblings, lovers, and colleagues of people with disabilities. Listen to people who have been segregated or devalued because of the way they look or move or communicate. Learn everything you can about the many ways people communicate and get around and show us who they are and what they know. Introduce yourself to people who had labels of mental retardation while in school, who now are able to communicate their thoughts and feelings and tell us all, loud and clear, “I am intelligent!” Recognize your prejudices and work through them. It will not be as difficult as it first seems. And you will never again make assumptions about people that result in the loss of opportunity, experience, or respect.

All people are people first. Everyone belongs to this wonderful life. No one should have to conform to someone else’s standards before they are told that they are “good.” We all belong. We all have strengths and weaknesses and our own individual potential to be great people and to live the lives we want. We can all lead happy and fulfilling lives, supported by those around us to be successful adults. It is up to all of us to examine our own core beliefs and to spread the word of the least dangerous assumption. We can no longer allow the justification of a prejudice that is so dangerous. Now is definitely the time to believe that all people are valued individuals with limitless potential. Keep on fishing - the lake is overflowing!!!!

Rossetti, Z. & Tashie, C.

University of New Hampshire
Institute on Disability

10 Ferry Street, #14

Concord. NH 03301

http://www.iod.unh.edu

Taken from this website:
http://www.inclusive-solutions.com/leastdangerousassumption.asp

I cannot tell you how moving this is to me, to read this, and to hope for a world where everyone treats people with disabilities in this way!!!!

Love one another!~

Nick Vujicic...

2009-04-14T00:00:00.007-05:00

Nick Vujicic beautiful...VERVE.

This is the new dvd that he has out and it looks amazing. I also searched through the videos section of the website and watched many of them, and they are all amazing. This one has to be my FAVORITE though!!! What do you think?

Love one another!~

Caylee passed her purple best test!

2009-04-11T01:11:00.003-05:00

Enjoy these video highlights of Caylee's purple best test today for Tong Il Lo. She did FANTASTIC!!! I am feeling more and more confident she can take care of herself all the time. Watch out to any boys who may get too fresh! LOL!

Congratulations Baby Girl! I am sooooooo proud of you, and your perseverance and dedication!!!

Make an on-line slide show at www.OneTrueMedia.com

Caylee and Sam's Magic Quest...

2009-04-10T23:54:00.002-05:00

This is a game for the kids to do at the Great Wolf Lodge; right up Sam's alley! He liked this much more than the water park I think. What kid doesn't want a magic wand that they can wave at things and they respond?!? They get to feel like Harry Potter for the day, it's really cool!

Make an on-line slideshow at www.OneTrueMedia.com

LOVE this face!

2009-04-10T01:14:00.001-05:00

Having a BLAST!

2009-04-09T11:56:00.001-05:00

I hope you can all see Joshua's face in this picture, it's awesome! (click the pic and it gets much bigger) We were so thrilled that he LOVED this ride and we didn't traumatize him taking him down. LOL! We are going back for more today, and I'll have lots more pictures and videos too I hope. We are ALL having a blast, but I think Josh thinks he has died and gone to HEAVEN! This is definitely his DREAM vacation.

Crazy Sexy Life

2009-04-06T22:48:00.002-05:00

A new blog/website by Kris Karr, "best-selling author, filmmaker, and motivational speaker. She is the subject of the inspirational documentary,Crazy Sexy, Cancer, which she wrote and directed for TLC and Discovery Health".

Crazysexylife.com is a supercharged health hub filled with compassion, knowledge, and an anything-is-possible spirit. Our righteous mission is to bring together amazing resources and cutting edge experts in one easy to navigate hot spot. Each time you visit you’ll be greeted by Kris’ latest blog or by one of her righteous Blog Posse members or guests.

Check out these videos:

Crazy Sexy Cancer promo from Crazy Sexy Life on Vimeo.

TV appearances '07 from Crazy Sexy Life on Vimeo.

Welcome to CSL! from Crazy Sexy Life on Vimeo.

Healthy benefits of a couple of favorite spices of mine...

2009-04-06T22:08:00.004-05:00

Stolen, from my friend Jennifer. Thanks for posting Jen!

Turmeric, we love to put turmeric in eggs over here, it is so yummy.

Cinnamon, we LOVE cinnamon in just about everything, even our smoothies and homemade salad dressing! Some fun facts about cinnamon.

Gymnastics

2009-04-02T16:13:00.002-05:00

Joshua is loving gymnastics. I am loving watching him do it! Every week, his strength and flexibility improve. His coach, Coach Denise, is FABULOUS. I love that she is so sweet, loving, encouraging, and fully expects Joshua to understand her and to JUST DO IT! It's pretty awesome to watch them work together!

The JOY of flying!

2009-04-01T16:14:00.000-05:00

Joshua got a chance to go up in a small airplane a few weeks ago, through a program called Challenge Air. It's a program for kids with special needs, if you know of or have a child with special needs, check it out, it's free and a wonderfully fun time!! Joshua would go up every day if he could, he just loved it. Watch his face closely in the video, it's difficult to hear his squeals of joy over the plane's engine, but I don't think his smile could have gotten any bigger, or his eyes! LOL! It was so awesome to be able to do this with him, Kevin and I loved seeing his reaction, and it was Dad's first time up in a small plane so he was in heaven also. :-)

Love David Cook....

2009-03-31T22:31:00.000-05:00

This is so important to watch!

2009-03-31T14:29:00.003-05:00

LOVE his sentiments!!!!

"It defies rational thought why you would pick on that group"

He is speaking of millions of people in this world with intellectual disabilities. Don't be a coward, spread the word to end the R word!!!! There is never a nice way to use it!

Ta da!

2009-03-14T21:26:00.003-05:00

I wouldn't normally be showing off my tummy in a blog post, but I'm just so excited about this I couldn't help myself! Two weeks ago, I was shimmying into these jeans and then do all the crazy stretching poses to stretch them out after they were actually on! The raw food diet is amazing. I have had this extra weight that I have done everything to get rid of for years, but nothing has worked, and now voila'!

Exciting times!

Smoothies...

2009-03-10T21:42:00.003-05:00

I am beginning the Green Smoothie Queen 7 Day Challenge tomorrow. Click to check it out.

I made my favorite one yet tonight. I threw into my vitamix:
2 frozen bananas
about 1/2 frozen blueberries
1 and 1/2 cups of fresh raw spinach
1/2 cup fresh cilantro
1 inch piece of peeled ginger
tablespoon of agave
10 ounces of water

WOW! It was awesome and one I'll definitely be having over and over again. It sounds so weird if you've never tried it before, but man, it's crazy good! :-)

YUMMY raw candy!

2009-03-09T23:43:00.004-05:00

I have made this a few times now. One time I used Sun Butter another time peanut butter and tonight homemade almond butter, it's ALL good. :-)

This is a recipe that I found in Alyssa Cohen's book Living on Live Food, which I highly recommend! She called them Almond Butter Balls, and didn't roll them in the extra nuts, but I like them better my way. :-)

Sun Butter Balls

1/2 cup of sun butter

1/4 cup sunflower seeds (to hold aside)

1/2 cup sunflower seeds

1/2 cup of raisins

1/2 cup of honey or agave

Grind 1/4 cup of sunflower seeds in food processor and set aside in small bowl.

Grind sunflower seeds in food processor until fine and add raisins, add to a bowl with honey and sun butter and mix well.

Roll mixture into balls and then roll into the extra bowl of sunflower seeds to coat.

Put in refrigerator to keep, much better to eat after they are firm!

I also added dates to my last batch! YUMMO! Everyone loved these, Caylee said they were spectacular and tasted like eating raw cookie dough. Who doesn't like that? :-)

Eating a raw vegan diet..

2009-02-24T21:27:00.004-06:00

I am on a 30 day cleanse right now, which consists of eating a 100% pure raw vegan diet. Today is day 8 and I feel really wonderful!

I was actually only planning to do it for a week, but I feel so good, and it's so easy for me that I am going to go all the way to 30 days. I am sitting here right now, in heaven, eating organic medjool dates. Oh, they just like eating a wonderful sweet covered in brown sugar. Yummy. I close my eyes and chew and sigh contentedly. Ahhh...

As the week has gone on, and I have felt better and gotten past all of the detoxification symptoms, I have realized that I can easily eat this way for the long haul and be perfectly content. After the 30 days, I may start to add in some cooked grains like millet and quinoa, my two favorites.

I realized yesterday that if I wasn't already used to being on a gluten and dairy free diet, that this would be quite a bit more difficult to adjust to. I mean that in terms of "self denial". I am already used to going to events or people's houses that have nothing that I can eat, because they have foods with gluten or dairy in them. I have never even felt like I fit in with the gluten free/celiac crowd because of my dairy intolerance. In the beginning it was really difficult, because food is something that I have never deprived myself of, and honestly was quite the glutton for certain foods, like sweets. Realizing that I could not tolerate gluten, and the fact that it did make me learn "self denial" is probably one of the best things that has ever happened to me. I no longer have any longings for foods that I can't eat. I can go to any event where people are eating things that I can't tolerate, and it truly doesn't bother me in the least. That is such freeing feeling really! For me, anyhow.

I used to be ruled by my stomach. I couldn't pass Sonic without needing french fries or a small cheeseburger. Now, I pass every restaurant without even thinking of food. Like I said, it is liberating, to not be a slave to my stomach.

I have been reading raw "foodies" blogs, and message boards, websites, and books recently, just taking in all that I can. If you are interested I have a raw blog list in the sidebar, under the angel friends list.

Love one another!~Yvonne

House selling...

2009-01-26T15:17:00.002-06:00

Our house has been on the market for three weeks now, yet we have not even had one call with anyone wanting to look at it. It's getting more and more difficult to keep up the perfect look of the house, when I feel I am working myself so hard for nothing. It looks nice, and we all enjoy it looking so orderly, but it's a full time job. I am spoiled I suppose, used to playing more with Josh, reading...and while I could technically still do those things, I find that I have only so much room in my mind and it's now consumed with other things. I am too much of a tunnel vision type I suppose. It's been stressing me out.

Today though, I made up my mind to do a yoga dvd that I enjoy, and it really made a difference. I am very glad that I did it, I feel much less jittery, and able to think more clearly. It's been a long time since I have taken that time to care for myself in that way. I am very thankful that I did take that time out to do it today. I will definitely be trying to do more of it.

We have a contingency contract on a house that we like right now. I do hope that we soon have a buyer for our house and that we are not wasting this other couple's time, keeping them tied up in a contract with us. I am trying very hard to keep positive and remember that the Lord is in control of it all, and not feel badly for it.

Company is here, have to run!

My BABY boy is 5 years old today!

2009-01-20T23:10:00.004-06:00

I am feeling very, very blessed and grateful tonight. My Joshua is 5 years old today. I thought that since most of you have never seen a picture of Josh when he was a baby, I would post this one. His foster dad, Terry, sent this to me, and I just treasure it!! I never got to see Joshua this little, as he was 18 months old when I met him and brought him home. He is just as beautiful as a baby as he is now...those eyes, that smile!!! He just melts my heart COMPLETELY! He is such a huge blessing to us, I thank God for him every day, but have especially been refecting on it today, that his birthmom was giving birth to our baby boy 5 years ago today. WOW!!!! God is AWESOME!

Josh looking at his calendar of friends...

2009-01-18T14:23:00.003-06:00

Joshua loves to look at the Angelman Calendar, so I put all the pages from last year's calendar in page protectors, and a binder, and he LOVES it! It's now his own special book, and he will look through it with me for a very long time. I got this video of him...

Caylee's video of Josh...

2009-01-17T01:16:00.002-06:00

Make an on-line slideshow at www.OneTrueMedia.com