My Nonprofit Reviews
Lisa106
Review for Foundation for Angelman Syndrome Therapeutics, Downers Grove, IL, USA
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!
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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
Review for Foundation for Angelman Syndrome Therapeutics, Downers Grove, IL, USA
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!
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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.
