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

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?

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

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...

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?

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!!!

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...

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

MERRY CHRISTMAS!

Joy Love Story Holiday

Create photo new year's cards with Shutterfly.

View the entire collection of cards.

Walking...

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

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!

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...

FAST Gala

Hubby and I, with Colin Farrell, at the 2010 FAST Gala (Foundation for Angelman Syndrome Therapeutics)

Angels on Earth

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: