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2 reviews

Review for International Rett Syndrome Association, Cincinnati, OH, USA

Rating: 5 stars  

I would not be a part of this wonderful organization if it weren't for the fact that my granddaughter was born with Rett syndrome. Now, after several years of involvement with, I truly believe that we are advancing towards a cure for this devastating disease. IRSF is the largest, most comprehensive and focused organization for parents, scientists, interested professionals and others concerned with Rett syndrome. IRSF has been recognized and awarded for its critical purpose and careful stewardship. The mission for IRSF is to accelerate research for treatments and a cure for Rett syndrome while improving the quality of life for those living with this complicated providing life-saving information, programs, services and support forums.
Submitted by Donna W/

Role:  Volunteer

Review for International Rett Syndrome Association, Cincinnati, OH, USA

Rating: 5 stars  

I did not choose this path.....Rett syndrome chose me because my granddaughter, Naomi, has Rett syndrome! I am a grandparent representative and I'm also on IRSF's Family Advisory Board. I know first hand the effect Rett syndrome has on its victims and their families. I also know that IRSF has made a hugh and positive impact for my granddaughter and her family, by reaching out, providing support, services, funding, continuing research and awareness for treatments and a cure. I volunteer for IRSF because I feel that I CAN make a positive difference for Rett families by listening, and letting them know that they are not alone! I continue to spread Rett awareness to all who will listen, including 30 state governors, through their October Rett Awareness Proclamations. Because of The Internatioinal Rett Syndrome Foundatiion (IRSF) I continue to have hope!

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Role:  Client Served