International Rett Syndrome Foundation
Rating: 4.81 stars 21 reviews
Location: 4600 Devitt Drive Cincinnati OH 45246 USA
The core mission of the IRSF is to fund research for treatments and a cure for Rett syndrome while improving the overall quality of life for those living with Rett syndrome by providing information, programs, and services.
Programs: IRSF is the world’s leading private funder of basic, translational and clinical Rett syndrome research, funding over $28M in high-quality, peer-reviewed research grants and programs to date. Annually, IRSF hosts the world’s largest gathering of global Rett researchers and clinicians to establish research direction and priorities while exchanging ideas and the most recent information. IRSF is the most comprehensive non-profit organization dedicated to providing thorough and accurate information about Rett syndrome, offering informational and emotional family support, and stimulating research aimed at accelerating treatments and a cure for Rett syndrome and related disorders. IRSF has earned Charity Navigator’s most prestigious 4 star rating. To learn more about IRSF and Rett syndrome, visit www.rettsyndrome.org or call IRSF at 1-800-818-RETT (7388).
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1 person found this review helpful
Of late I have been hearing about Rettsyndrome.org (IRSF) on National Public Radio's PSA's. I have an interest in not for profits and the work they do, so, I thought I would do a little investigating, and suffice it to say, it's a charity that now has my attention. Although a rare disorder, (IRSF) seems to be doing a GREAT job of spreading the word, and making known what the victims of this horrible disease face, daily. They sponsor "Strollathon's both locally in Cincinnati and nationally, and based on what I have read, they appear to be the absolute leader in research. Hopefully, I can make an impact, and along with your organization, inspire them to open their hearts, and then, open their wallets! Good luck and God Speed IRSF!!
2 people found this review helpful
Trying to find out any information about this foundation is practically impossible from the IRSF website - it's unbelievable that their Annual Report and 990 have not been updated since 2010!
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Dear rgoodman, thank you for alerting us to this oversight. Our 2011 forms are now posted to the website. We are a small handful of people working intensively to accelerate research and support families. We operate transparently and with integrity, and with the support of scores of volunteers, mostly family members of a child with Rett syndrome, who are proud to represent our organization, and believe in our mission. Every phone call or email is answered promptly. We invite you to contact us directly with any question you may have, at any time. Sincerely, Paige Nues, Director, Family Support, IRSF