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My dreams have been replaced by bigger and better ones.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.
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.
Over the past 35 + years my family and I have been associated with other foundations and charities by serving or being served. In our joint opinions, the Foundation for Angelman Therapeutics is rated one of the best. We became aware of them because of our 33 yr. old son who was diagnosed with Angelman Syndrome at age 10. We have been 100% satisfied with the service received through the foundation but also with the way this all volunteer organization utilized the donation of our time and money. I would not hesitate to recommend F.A.S.T. to a newly diagnosed parent looking for support and information, a donor looking for a place to donate their hard earned dollar or as a place for someone to volunteer their time and services.
My daughter is 10 and has Angelman Syndrome. When we got her diagnosis 9 years ago, our neurologist cautioned us from reading the reports on the internet about people with Agelman. Since then, research has exploded. Now we expect the development of a therapeutic during her lifetime. FAST is making this possible as they funnel every cent toward research. The icing on the cake is that the staff and support and community of FAST is not just geared toward research; the support they provide (through personal relationships) is immeasurable.
FAST is an incredible organization dedicated to finding a cure for Angelman Syndrome. It has already made incredible progress and with further support will make even greater gains in the search for the cure.
After 25 years of living with Angelman Syndrome, the Foundation of Angelman Syndrome Therapeutics has located and funded research for a "cure". One day, with the help of FAST to funnel much needed research dollars, I hope to hear my son speak. Once he speaks, the world will open for him. No other organization has been able to do what FAST has done in just a few years.
When my daughter, Elena, was diagnosed with Angelman Syndrome (AS), a severely limiting neuro-genetic disorder that causes seizures, developmental delays and other challenges, there was little to no hope offered to me. Thankfully, several other parents refused to accept this and FAST, the Foundation for Angelman Syndrome Therapeutics, was formed. FAST's sole purpose is to facilitate a cure for AS. Along the way they have funded a very promising clinical trial, sponsored and funded up-and-coming scientists, provided education and resources for parents, and united a community of families in hope. Entirely staffed by volunteers, most of whom are parents of children with AS, 100% of every donation goes directly where it is needed - finding a cure for our kids!
When my daughter was first diagnosed with Angelman Syndrome, there was no cure, and little hope for one. Thankfully, FAST is working to change that. As an all-volunteer organization, every dime donated to FAST goes toward finding a cure for Angelman Syndrome. In 2011, FAST volunteers helped unite and inspire the AS community to win the grand prize of $250K in the Vivint Gives Back contest. A month later, one of FAST's-funded scientists discovered that a common antibiotic, minocycline, restored functioning in an Angelman Syndrome mouse-model giving us hope that our children could not only be cured, it could happen soon! Only a few months later, FAST put the prize money to great use and funded the Minocycline human clinical trials. But FAST hasn't stopped there. FAST is continuing to gather fund donations, including a recent anonymous donation of $250K, and is continuing to fund and support scientific research. I know there will be a cure for Angelman Syndrome very soon, and it will be due in large part to FAST and all of its hard work. Thank you, FAST!
In order to supplement the national foundation, this organization was started to raise more funds for study, as I understand it. As a group of parents, there is a more personal feel to the parent involvement. With the funds already raised, a clinical trial has been started already. More power to the participants! We all are hoping while we wait for the results.
As an advocate, volunteer, client served, and medical professional I give Kudos to this completely volunteer based organization. How such a young non profit can become so positively involved in the Angelman Community in such a short period of time speaks loudly to the passion and committment FAST has for supporting, advocating for, and funding promising Angelman Syndrome research. They go above and beyond to make those affected by AS feel empowered to "speak up" for a more inclusive life, to "speak up" for more research, and to "speak up for a viable therapeutic and cure". They fund researchers who see those with AS as people first, and research second. Reaserchers who are professionally invested and humanly invested. Thank you FAST keep up the positive message of hope that you have instilled in this community!
FAST is the best non profit because its giving families hope that one day our beautiful angels might be able to live a more functioning life. Its because of this organization that I can wake up every morning with hope.
super organisation ! toujours à la point de la recherche. un énorme espoir pour nous, parents d'enfants angelman. Comme vous dites dans votre pays : two thumbs up !"
As a parent of a child with Angelman Syndrome, there are just not enough ways to express my appreciation for the work that F.A.S.T is doing. They are the driving force behind AS awareness and the advances in research that we have seen over the last few years. There is absolutely just no stopping F.A.S.T. in their mission to find a treatment for Angelman Syndrome. In addition to their work in research, they have developed an amazing community of parents/caregivers/educators/scientists that supports each other unconditionally. F.A.S.T. is most definitely making the lives of people living with AS and the world in general a much better place.
My daughter was diagnosed with Angelman Syndrome in 2007 when she was just over one year old. The information we received was incredibly bleak and we were devastated. Not long after we discovered F.A.S.T and were given wonderful information and discovered they were hopeful that a treatment would be found in the near future which would improve our childrens lives. Since then we have been full of hope, and are incredibly excited about the current trial in Florida. Thank you F.A.S.T for everything you do for our Angel Families. Anne Gribbin
I cannot say enough wonderful things about the FAST organization and all of those that it serves. This organization has opened up so many doors for our children and families. The real hope of a cure for our children would not be possible if it were not for this group and the amazing team of doctors and researchers they have put togethr. And as for the community of people that are now a prt of my life because FAST exists....where do I begin? It just doesn't get any better. We laugh together, cry together, get angry, argue, pray, hope, dream. Being able to share our experiences with one another, receive advice and give advice has been so beneficial and rewarding as an Angelman parent. Thank you to all of those that are giving so much for our children. And thank you for allowing me and my family to be a part of an incredible group of individuals. God Bless FAST!!
As the parent of a young adult with Angelman Syndrome, I have the deepest appreciation for the untiring effort and support that the all volunteer staff of F.A.S.T puts forth, not only to find a cure for our children, but to provide a network of families and professionals that are a constant source of information, ideas and support. i believe the lives of families with AS children have been, and will continue to be, profoundly improved because of F.A.S.T
FAST is an amazing charity. It has only been in existance for a few years but it is already funding a clinical trial which could be life-changing for our children with Angelman Syndrome which is a devastating developmental seizure disorder which can be life threatening. FAST never stops with it's mission to find a cure. The board is made up of volunteers who work so hard for no reward other than the chance of finding a miracle. As busy as they are, they still take the time to care about the parents they are helping and I am honoured to call them my friends.
Because FAST exists, I have hope. My son has a neuro-genetic condition that fewer than 500,000 people on the planet have. On the maternal 15th chromosome, there is a portion where the gene expression is critical - because it's purpose is to create a protein which helps people learn. It also has other implications. My son has two paternal copies of this chromosome. Some patients with Angelman Syndrome have a maternal copy, but a piece is missing, or in the wrong place. There are all kinds of research efforts in place due to organizations such as FAST. FAST is wholly volunteer-run. FAST is amazing. FAST holds an annual event in December to raise funds and recognize the parents, bring us together under one roof for fellowship. Because of the recently begun Minocycline clinical trials, which FAST has been instrumental to, I have hope. As a single (divorced) mother to a child with Angelman Syndrome, I sometimes struggle to smile while I am at work. My son brings me a lot of happiness when I am at home. FAST helps me smile when I get frustrated because I know they are dedicated to curing Angelman Syndrome. They will not stop until there is a cure. And the knowledge that they gain is not limited to AS but could potentially serve Autistic or Alzheimer's patients and Epileptic patients. This is life-changing and I will be forever grateful to these people and their dedication.
My daughter has Angelman Syndrome, a rare neurogenetic disorder. When you recieve the phone call that your child has a genetic disorder and will never speak, will suffer from seizures, and will need care and assistance her entire life, the future can start to look very bleek and scary. The work that FAST supports has shown that there is a light in that future! This research not only has the potential to impact those of us with children who have AS, but the implications of the work FAST supports reaches far and wide- through the autism, alzheimers, and even more communities!!! If the work that FAST is doing creates what is essentially a cure, or even close to it, for AS- a GENETIC CONDITION- then that would open up so many possibilities and provide so much HOPE that a therapeutic cure could be found for all genetic conditions. This research will help my daughter find her voice. And that, that is priceless.