International Rett Syndrome Foundation

Rating: 4.81 stars   21 reviews

Issues: Cancer

Location: 4600 Devitt Drive Cincinnati OH 45246 USA

Mission:

 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).
2014 Top-Rated Nonprofit
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More Info

EIN 31-1682518
1.800.818.RETT
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

Our daughter was a perfectly healthy typical baby, who hit every single milestone for one year. She lost all of her skills at one year of age, and we began a heart-wrenching journey from specialist to specialist looking for answers. In 2001, she was finally diagnosed with Rett Syndrome. Her neurologist comforted us by directing us to IRSF and promised us that with IRSF's help, we would regain lost hope and our daughter would thrive. IRSF did give us hope. Within weeks we were connected with experts in the field of Rett Syndrome, we became aware of the latest cutting-edge research, and we received passionate support that changed our daughter's life. Through IRSF, I have discovered my own passion of advocacy, and I can't imagine a better channel by which to help other parents whose lives are touched by this devastating disorder. IRSF has been my strength, my hope, my support and my community to help my daughter and to help our family. I cannot imagine life without this organization.

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Rating: 5 stars  

1 person found this review helpful

The International Rett Syndrome Organization is the leading Rett Syndrome organization in the world.

IRSF is vigorously searching for a cure/reversal of Rett Syndrome. While doing so, they are the only organization that helps with TODAY's symptoms. They have been with us since our daughter's diagnosis at 17 months. Sorel is now almost nine years old and has benefitted greatly with all the early intervention of professionals from this wonderful organization. I don't know where we would be without them.

We are truly blessed to be surrounded by all these passionate professionals that I can call family.

I recommend reaching out to this organization if one feels that there daughter/son has Rett or is showing signs of Rett Syndrome.

Sincerely,
Chris (Sorel's Dad)

When was your last experience with this nonprofit?

2014

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Rating: 5 stars  

1 person found this review helpful

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 IRSF....Rettsyndrome.org, 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 syndrome.....by providing life-saving information, programs, services and support forums.
Submitted by Donna W/

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1 previous review
Rating: 5 stars  

2 people found this review helpful

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!

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?

2011

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Review from CharityNavigator
Rating: 5 stars  

1 person found this review helpful

This organization does it all - family support via internet, social media, yearly conferences, professional medical experts doing vetting to get the best possible therapies for our kids - one on one support for new parents - webinars on new technology. When it is hard to keep up with the ever changing Techo world - IRSF is doing it for parents, providers, educators and anyone else who is touched by our Rett kids!!

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Rating: 5 stars  

1 person found this review helpful

Truly the leading Rett Syndrome organization in the market. They just rebranded as rettsyndrome.org and updated their website so folks like rgoodman (Comment on this page) can find the info they need. This organization leads the right approach to treatments, studies, and research for rett syndrome. This non profit was there for my family when our daughter was diagnosed.

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Rating: 5 stars  

Our daughter is 35 and has Rett syndrome. We finally received the diagnosis when Heather was 10 years old. When we reached out to other families it gave us hope and strength to be part of something working to find a treatment and cure. We have been advocating, educating and spreading awareness of Rett syndrome ever since. It is great to be able to meet and talk to other families as they learn about their daughter’s diagnosis and we all help each other get through this new adventure. IRSF has been our connection for support and education for over 25 years.

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