The money this nonprofit collects ALL goes to research for a cure for Angelman Syndrome. They are tireless in getting the word out about the syndrome and are very supportive for families of Angels.
My beautiful granddaughter has Angelman Syndrome. Living far away, I feel helpless. It is wonderful to know that the Foundation for Angelman Syndrome Therapeutics is doing so much to find a cure, to educate, and to support families and caregivers. The volunteers who run it take their only reward in a job well done. I don't know another group that does as much for our Angels or is getting us closer to a cure. I congratulate them and thank God FAST is doing so much for our Angels.
FAST gives all parents with Angelman Syndrome hope, they are charging ahead with funding for research to help try to find treatments to help our children and hopefully a cure. They are a board of volunteers that really make the most of the money thats fundraised pumping almost all of it into research. They are not paid staff. I really think with FAST we will get a cure soon.
When our son Ryland was diagnosed we were devastated! Then we were introduced to FAST! We actually have hope Ryland might one day lead a normal life. The entire FAST Organization if filled with wonderful dedicated people, without them we wouldn't have hope for a cure. We thank them from the bottom of hearts for working so hard and being so dedicated in helping our children.
Foundation for Angelman Therapeutics is one of the best organizations I have volunteered for. They work tirelessly to help our children. The hope they have given our children and families means so much! Thank you FAST!
My son Joey was diagnosed at 2 1/2 years of age, it wasn't until years later when FAST was formed that I truly had HOPE, hope for a treatment, better communication with specialists for our Angelman Community, and hope for communication. Since FAST was formed it has truly changed our lives for the better, I truly cannot thank them enough.
My son, Jimmy, was diagnosed with Angelman Syndrome at 9 months of age in 2000. There was no talk of a cure, just a life of maintaining his existence. It was heartbreaking. When I first started hearing about F.A.S.T. a few years later, I didn't pay much attention. I had already been told by PROFESSIONALS all that my son would not do.
But the foundation was not going away, in fact, it was getting stronger. It was also being supported by parents that I knew and respected.
My dreams have been replaced by bigger and better ones. If not for my child, then for someone else's child, which makes all the support worth it.
FAST is setting an unprecedented example of how a foundation should be run. They are streamlining the way research is conducted for individuals with Angelman Syndrome. FAST takes a very innovative approach to bridging the gap between parents' reality and research. They do a marvelous job of motivating parents to understand that a cure is within our reach. FAST's mission aligns with everything I want for my child. You can't get anything better than 100% of donations towards research to benefit our loved ones!
My granddaughter was diagnosed over six yrs ago. All the literature out there told us she would never walk, talk or do things for herself. It is by the grace of God that a mother of another child with AS had the dream of forming an organization made up up fellow Angelman families/friends that wanted more for their children. More for my granddaughter. That is when FAST was formed and they began searching for researchers that saw the possibilites, researchers that BELIEVED in our children/grandchildren. Researchers that would dedicate their lives to finding a cure for AS. To my knowledge FAST is the only organization in the world to fund a human clinical trial on Angelman Syndrome. That speak volumes considering they have only been in existence 5 yrs. My support, my prayers and my families devotion lies with the Foundation for Angelman Syndrome Therapeutics. They have the drive and willingness to bring our children born with AS a cure one day soon. Hope Reigns Supreme!
I nominate the Foundation for Angelman Syndrome Therapeutics for their continued outstanding support of my granddaughter and her fellow angels born with Angelman Syndrome. It is because of this organization that we just completed the first ever human clinical trial on a medication that may bring hope to her and all her friends with AS. This organization has been in existence less than 5 yrs and is totally nonprofit, ran by parents and friends of those with AS and ALL funds go for research projects. Not one board member collects a pay check. They are all volunteers working towards a cure for AS.
Anybody who's ever received a diagnosis of a developmental and/or neurological disorder for their child knows how incredibly difficult those first few days/months are. It was no different for myself, as I can still remember the sensation of being gut punched, curled up in a corner and distraught, not even trying to contain my anger and fear.
It was only after I'd summoned up the courage to look up Angelman Syndrome online, to actually commit to understanding what life for my son (and for the rest of our family) was going to look like from here on out, that I came across FAST and their mission to fund research into Angelman Syndrome therapies. It sounded too good to be true; I went from the lowest point in my life to something resembling elation. I had to do background research on the organization to make sure that the information on the site was legitimate and not pandering to the hopes and dreams of Angelman caregivers and parents. After getting in touch with several members of the FAST board (all of whom reached out to me personally after seeing my facebook post on my son's diagnosis), I was sold on the goals and mission of FAST.
The foundation has provided hope, education and a community that galvanizes whenever there is something that can help those afflicted with Angelman Syndrome and I'm not sure where we would be right now without their hard work and commitment.
When my daughter was diagnosed at 11 months, I was saddened there was likely nothing to be done about it. I am a developmental biologist by trade so I knew that if the brain formed incorrectly, the cards had been dealt. Imagine my surprise and delight when the research began to show that Angelman Syndrome is not a developmental defect, but a biochemical defect. In other words, my daughter's brain formed fine, it just wasn't working properly.
With that knowledge, when I was asked to join the Foundation for Angelman Syndrome Therapeutics (FAST) at its inception, I did not hesitate. I serve as the Chief Science Officer for FAST. Since then we have funded over 1.2 million dollars in research in just three years, have funded preclinical work that led to a clinical trial, and funded the clinical trial which ended this past March. We are a small group of dedicated parents, friends and family members in an incredible community determined to change the world for our loved ones and anyone who is dealing with a defect in learning and memory.
Through the Foundation we have also provided educational summits to the community free of charge. These summits covered communication and literacy for those with Angelman Syndrome in 2012, and this year will focus on Sleep Issues and Challenging Behaviors. We are taking any and all steps possible to make the lives of those with Angelman Syndrome the very best they can be.
Join us and be part of the miracle - www.CureAngelman.org