FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS

Rating: 4.9 stars   101 reviews

Issues:

Location: PO Box 608 Downers Grove IL 60515 USA

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
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Community Reviews

Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2014

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

Thank you FAST for being a voice for Angels who cannot speak. Thank you for taking a stand for Angels who cannot stand without help. Thank you for supporting research with every dollar you get to better the lives of Angels who can't help themselves. Thank you FAST for explaining AS to the public for families of Angels who wish more people understood. Thank you for the support you give Angels' families to help them get through each day. Thank you for being all good people who are in it only for the good of Angels. Thank you.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

Was this review helpful? 
1 previous review
Rating: 5 stars  

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.

Was your donation impactful?

Definitely

How likely is it that you would recommend that a friend donate to this group?

Definitely

How likely are you to donate to this group again?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 0 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
1 previous review
Rating: 5 stars  

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!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

FAST is a wonderful organization that is focused on a goal that all of us parents want to see reached: finding a therapeutic for Angelman syndrome. The organization is run by people that really care about kids with AS - as many in the organization have children with AS. We are all thankful for the work that FAST does and want to see it grow and grow!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

F.A.S.T. is the most amazing organization to be involved in. I as a Nana am involved with this organization at a arms lenght. My Grandaughter Arianna (my soul mate) has benefited from their participation and committment to the Angelman Community. F.A.S.T helps the Angel Parents and children they are supportive and giving. We are so lucky to have such an organziation to bond with ua as grandparents, parents, siblings and children of those who have Angelman.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A lot

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

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!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

Was this review helpful? 
1 previous review
Rating: 5 stars  

1 person found this review helpful

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!

I've personally experienced the results of this organization in...

the unification and hope brought about by proactively funding the scientists who are going to cure our kids.

If I had to make changes to this organization, I would...

get more people involved in trying to cure our kids fast by volunteering or donating to FAST!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

Instead of allowing Angelman Syndrome to control my life and my daughter's life, by being active in finding a cure, with FAST's help I am controlling Angelman Syndrome.

How did this volunteer experience make you feel?

Wonderful, inspired, hopeful and a part of the amazing AS community.

Was this review helpful? 
Rating: 5 stars  

FAST has galvanized the Angelman Syndrome community with extensive promotion of awareness and raising the profile of Angelman Syndrome in the community and has acted as a form of liquid gel to bring together many families throughout the world and let them know that there is hope there is progress in research that gives real prospects of cures of some or even all of the traits of Angelman Syndrome. Get behind this and work together as a community for all our children to realize their potential in life and for an end to the uncertainty and fear caused by the frailty of the younger children no longer at risk of having such a short life.

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful? 
Rating: 5 stars  

Having a child with a rare syndrome (Angelman Syndrome) and living in a fairly remote part of the world (New Zealand), my outlook for the future had been fraught with anxiety, and the journey had been a lonely and isolating experience. However, since the formation of the Foundation for Angelman Syndrome Therapeutics, my entire outlook on the future has done a dramatic turn-around. Paula Evans and the Board of FAST are the most dedicated team we could wish to have on our side. As a non-profit organisation, they willingly share their own time and expertise in a relentless quest for a 'cure' - a search for therapeutics that will help our children lead better lives. FAST’s integrity and their proactive approach as they tackle this challenge, have also inspired parents around the world. They have united us into a strong global community, offering uplifting friendships, vital and relevant information, and wonderful day-to-day support. As a non-profit organisation run by volunteers, I want to sincerely thank the Board of FAST for raising the bar so high. They pursue their objectives with thoroughness and vigour, and are definitely the FAST-est on the block. Well done for the successful funding of the current clinical trials which have gained so much international attention. I am VERY thankful to be part of such an outstanding organization!!

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?