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.
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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
Showing posts with label Vivint Gives Back. Show all posts
Showing posts with label Vivint Gives Back. Show all posts
Thursday, September 15, 2011
Wednesday, August 24, 2011
What my friend Bronwen and Actor Colin Farrell have in common...
Article taken from origninal source: Chester County Moms Blog
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.
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.
Friday, August 12, 2011
FAST Needs Your HELP NOW More Than EVER!
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
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
Thursday, August 11, 2011
The prayer that NEVER fails...
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!
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!
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...
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
Tuesday, August 9, 2011
Monday, August 1, 2011
Local Angelman Syndrome Group Moves Closer to $250K Grant
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.
Friday, July 15, 2011
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.
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 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
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.
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.
Tuesday, May 31, 2011
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
Tuesday, May 10, 2011
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
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
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.
You can then post it to your wall by clicking on the facebook symbol.
SECOND TIME VOTERS:
Log into facebook and go to:
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.
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