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Foundation for Angelman Syndrome Therapeutics

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Nonprofit Overview

Causes: Health

Mission: Dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.

Results: Minocycline Clinical Trials commenced April 2012

Target demographics: by raising funds to research therapeutics

Geographic areas served: supporting those affected by Angelman Syndrome

Programs: Fast's primary goal is to advance research leading to a cure for as.

as as is a rare disorder, the community of parents and caregivers of individuals with as rely heavily on social networking to become informed and seek advice and guidance on the challenges which the disorder presents. Its is one of fast's objectives to educate, support, and strengthen this community. In december 2014, fast brought together 527 parents/caregivers to hear about the latest research on as, the goals and objectives of fast, its progress towards meeting those goals and plans for the future. Speakers included the head of fast's scientific advisory board, dr. Edwin weeber, who cured as in the mouse model, as well as dr. Rebecca burdine, fast's chief science officer, colin farrell, jai courtney, retta sirleaf and paula evans. In addition, networking/mentoring opportunities were facilitated so that people caring for individuals of the same age or with similar circumstances could exchange experiences, information and guidance and solidify relationships.

literacy and advancing adventures in communicating camp for individuals with angelman syndrome and their families.

Community Stories

101 Stories from Volunteers, Donors & Supporters

Lois8

Volunteer

Rating: 5

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.

Previous Stories

General Member of the Public

Rating: 5

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.

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Donor

Rating: 5

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.

General Member of the Public

Rating: 5

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.

Judy33

Volunteer

Rating: 5

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!

Previous Stories

Donor

Rating: 5

Foundation for Angelman Syndrome therapeutics is an amazing nonprofit organization! They are made up of wonderful volunteers who give so much of their time to help find a treatment for Angelman Syndrome. I am so thankful to all of them for giving us hope for our children.

Geri W.

Client Served

Rating: 5

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.

Cherri C.

Client Served

Rating: 5

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.

Donor

Rating: 5

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!

Donna Y.

Client Served

Rating: 5

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!

Previous Stories

Client Served

Rating: 5

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.

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General Member of the Public

Rating: 5

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.

Rburdine

Board Member

Rating: 5

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

JonathanandMom D.

Client Served

Rating: 5

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.

Ana Maria G.

Volunteer

Rating: 0

Soy abuela de una niña con Sindrome de Angelman. FAST está realizando actualmente un ensayo clínico en humanos con minociclina, que nos llena de esperanzas en cuanto a la cura de este sindrome. Puede suceder pronto y será gracias al esfuerzo, dedicación y duro trabajo desarrolado por FAST , conseguir un futuro mejor para todas las personas afectadas. Gracias.

1

General Member of the Public

Rating: 5

Tengo una hija que padece el sindrome de Angelman y gracias a la FAST ahora por primera vez en toda su vida tenemos la esperanza de que pueda tener un futuro mejor. GRACIAS FAST!!!. Juan Jose Palomares - Madrid - Spain.

General Member of the Public

Rating: 5

Tengo una hermana que padece el Sindrome de Angelman y gracias a la FAST ahora por primera vez tenemos la esperanza de que tenga un futuro mejor. Gracias FAST!. Daniel-Madrid-Spain

1

General Member of the Public

Rating: 5

Tengo una hermana, Elena, que tiene el síndrome de Angelman y gracias a la Foundation for Angelman Syndrome Therapeutics por primera vez tenemos la esperanza de que mi hermana pueda tener un futuro mejor. Gracias FAST!!. Cristina - Madrid (Spain).

1

General Member of the Public

Rating: 5

Soy madre de una niña de 28 años que padece el síndrome de Angelman. Foundation for Angelman Syndrome Therapeutics nos ha dado por primera vez una esperanza de un futuro mejor para nuestra hija. GRACIAS FAST!!.

Client Served

Rating: 5

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.

dplegend

Volunteer

Rating: 5

There was no question that FAST stood for everything that I believed in and wanted to support as a parent of a newly diagnosed little boy with AS. This organization is committed to fighting for our children and spending every cent (100% to be exact) in the most efficient and productive ways that will produce life changing outcomes. The very first potential treatment for AS was funded by FAST and a community that worked hard to raise the funds needed to start the clinical trial that is currently under way. FAST's passion and determination is actually changing the way medical research is being funded and they have completely restored faith and hope that brighter days are ahead.

Previous Stories

Volunteer

Rating: 5

The mission of FAST has brought my family much HOPE during some initial dark days after discovering my son's AS. To learn that FAST is committed to funding the research that will bring meaningful treatments into the lives of our kids NOW while continuing to find the ultimate cure in the near future--- is simply amazing. What's even more amazing-it's driven by a volunteer board/scientific board & staff. Funds being raised via FAST are making big things happen and truly changing the landscape of our kids futures!

General Member of the Public

Rating: 5

Great foundation! I have 3 grade kids with Angelman's! Olivia 7 1/2, Harrison 6 and Dennis 4! Stacy R is the same mom of all 3. She is awesome and so is FAST! So very worthy of this praise! FAST gives us HOPE! Olivia's middle name!?

Sharon57

Board Member

Rating: 5

FAST has helped unify the community that cares about individuals with Angelman Syndrome, with a message of HOPE for a treatment for this devastating neurogenetic disorder. The organization's leadership volunteers the time and skills necessary for running the organization. Many necessary supplies and services are donated, meaning almost all of every dollar donated goes towards our mission of improving the lives of those with Angelman Syndrome and funding research for a cure. Members are empowered and inspired to contribute their own skill sets and resources to assist in the running of the organization and to fundraise creatively. This young and vibrant organization has already supported great progress in awareness and research funding.