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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Community Reviews

Rating: 5 stars  

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!!

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Rating: 5 stars  

I am a mother of an 11 year old girl with Rett Syndrome. When my family and I received our daughters diagnosis we were devastated. However, thankfully because of Rettsyndrome.org (IRSF), we were able to get in contact with other Rett parents and caring people who understood what we were going through. Since making contact with many families, we know that we are never alone and know there are many, many people who are out there to help, listen and fight for our girls!
I have been so inspired by families I have grown to know and love that I decided to chair my first CT Strollathon (one of an amazing fundraiser for rettsyndrome.org) this year. It was one of the most memorable and heartwarming experiences of my life. We know that with the help and commitment of rettsyndrome.org and the fight, strength and will of our Rett girls, we can conquer Rett Syndrome once and for all!!

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Rating: 5 stars  

Our ten year old daughter was diagnosed with Rett syndrome in 2006. Within days of her diagnosis, the International Rett Syndrome Foundation was there, with information about the diagnosis, about therapies and research, and connecting us with other families. The International Rett Syndrome Foundation funds cutting-edge research, from basic science to clinical trials. But it also does so much more than that. It educates and empowers families with the information to make the best decisions about their daughters' care, education, and happiness.

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Rating: 5 stars  

Amazing charity helping parents navigate the difficult new journey they face with a Rett Syndrome diagnosis. Providing parents hope with research programs focussing on treatments and s possible cure.

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Rating: 5 stars  

I have an 11 year old daughter with Rett Syndrome. I was devastated when I got her diagnosis. She was only 18 months old. The conferences provided by IRSF have empowered me and allowed me to feel like I always had support from AMAZING people. They made me feel like I was not alone in this journey to help my daughter have the best life possible. I have always been able to count on them. The people associated with IRSF truly care about the girls with Rett syndrome.

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Rating: 5 stars  

1 person found this review helpful

Our daughter is eight years old. She was diagnosed with Rett syndrome at age 2. The family conference put on by the international Rett Syndrome Foundation offered us an opportunity to first connect with many other families and professionals who believe in Kira's abilities. Our experience with the International Rett Syndrome Foundation was such a positive one I became a regional representative for the organization.

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Rating: 5 stars  

I have an 11 year old daughter with Rett syndrome. If it wasn't for the International Rett Syndrome Foundation, our family would be lost. We have all the faith in the world that the foundation is with us on this journey - every step of the way. Not only are they there to empower us by providing extremely important resources, they are also working feverishly to find a cure/treatments for our daughter. The combination of the support and the research dedication is something we greatly value and appreciate.

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Rating: 5 stars  

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  

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  

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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