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21 Reviews
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October 31, 2014

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October 31, 2014

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!!
October 31, 2014

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October 31, 2014

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.
October 31, 2014

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October 31, 2014

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.
October 31, 2014

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October 31, 2014

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.
October 31, 2014
1 person found this review helpful

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October 31, 2014
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.
October 31, 2014

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October 31, 2014

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.
January 17, 2013
1 person found this review helpful

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January 17, 2013
1 person found this review helpful

My daughter has Rett syndrome, and it robbed her of every skill needed for independence by 18 months of age. We lost our way as parents with this diagnosis. But with the immediate help and information from this organization, I was gifted trusted information and a solid foundation from which to be believe in the potential of research, and I learned the most effective things that I could do to keep her healthy and thriving. Today she is 10 years old and still working so hard every day. We are so proud of her. Without the right information from Day One, I don't think that would be the case. I have now dedicated myself to helping others in the same way while advocating for and supporting the advancement of research. We have not given up Hope, and that is a precious thing. Thank you IRSF! You have our trust and support.

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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?

2013

February 21, 2012
1 person found this review helpful

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Review from CharityNavigator
February 21, 2012
1 person found this review helpful

IRSF has been helping families who have a child with Rett Syndrome for many years. It is an excellent source for information, ideas, therapies, advice and hope for Rett families. I'm a busy working mom and my daughter with Rett is 28 years old. I turn to this organization to keep me updated in all areas regarding the care of my daughter. Parents support each other and give each other hope and strength to manage their more than usual difficult lifes. The funds that have been raised through IRSF have done so much for research that a light at the end of the tunnel can now be seen. Our prayers for our daughters and for many other types of disorders, are being answered, and IRSF is helping to lead the way.

More feedback...

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

October 4, 2014

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1 previous review
December 16, 2011

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 h... more

October 4, 2014

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/
December 16, 2011
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!

More feedback...

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

November 17, 2011

IRSF has been instrumental in my families ability to cope with the diagnosis of our daughter with rett syndrome. Right from the start their knowledgable and supportive staff was there for us to ask questions and lean and get involved in fundraising. IRSF has a crucial role in raising money for research and family support. I jumped on board as a volunteer right away by chairing a local event here in CA. I am now serving as a regional rep for IRSF to help other families on this journey. IRSF is an AMAZING organization-one I dont know what we would do without~!

The Great!

I've personally experienced the results of this organization in...

I have experienced the results of this organization in my personal family life-on a daily basis.

Ways to make it better...

If I had to make changes to this organization, I would...

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