Over 1.8 million nonprofits and charities for donors, volunteers and funders

2014 Top-Rated Nonprofit

International Rett Syndrome Association

2,534 pageviews

Nonprofit Overview

Causes: Brain Disorders, Health

Mission:

 The core mission of Rettsyndrome.org is to accelerate full spectrum research in search of treatments and a cure for Rett syndrome while empowering families through information, education and connectivity.

 

Programs: Rettsyndrome.org accelerates full spectrum research towards curing Rett syndrome (RTT) and empowers families with knowledge and connectivity. As the world’s leading comprehensive private funder of RTT research, we have invested more than $38 million in peer-reviewed research grants and programs to date. We are a 501(c)3 organization, earning Charity Navigator’s most prestigious 4-star rating. Visit www.rettsyndrome.org to learn more, or call (800) 818-7388.

Community Stories

28 Stories from Volunteers, Donors & Supporters

1

Volunteer

Rating: 5

When we first received the diagnosis of Rett syndrome, we were devastated. Who did we turn to? Rettsyndrome.org... and we've never looked back. Rettsyndrome.org is an organization dedicated to supporting research for a cure and supporting families who have received this diagnosis. Rettsyndrome.org empowers families with knowledge and important information to support our daughters (and sons) each day. We have found family conferences informative, and very helpful both socially and emotionally. Dr. K remains focused on finding the best therapies, and a cure for our girls...we cannot thank him enough for all that he does. The hope he brings to our family and families like ours, is immeasurable!

1

Volunteer

Rating: 5

Our 27 year-old daughter with Rett syndrome needs us to meet all her needs and to do that we need Rettsyndrome.org Formerly the International Rett Syndrome Foundation (IRSF) Rettsyndrome.org remains the leader in family support and research. There is no other organization that supports families with Rett syndrome the way Rettsyndrome.org does by providing a professional staff to provide direct support to families and to lead a dedicated group of parent volunteers who help educate and support families, and help increase awareness and advocacy in all 50 states. Like many older parents I’ll never forget the agony of spending long years not knowing what was wrong with our daughter, nor our gratitude to find support through the former IRSF when we did. The advances made because of rettsyndrome.org are too many to list here, so I will name just two. The first ever clinical drug trial for both women, and girls and this month opened it’s 10th site nationwide. And the multi-year Natural History Study, led by Dr. Alan Percy continues to provide invaluable information for both parents, and the medical community. Part of the Rettsyndrome.org's Medical Advisory Board, Dr. Percy also directs of one of the 22 expert clinic sites supported by Rettsyndrome.org around the US. Both parents and leading researchers support Rettsyndrome.org I hope you will too.

1

Volunteer

Rating: 5

Great organization! Raising money for research, spreading awareness and helping the families whose lives have changed due to Rett Syndrome.

2

Professional with expertise in this field

Rating: 5

Rettsyndrome.org is the only non-profit that fully supports research AND family support. They go above and beyond to ensure families have access to the resources and tools they need all while funding cutting edge research. I am behind the mission of Rettsyndrome.org 100%!

1

Volunteer

Rating: 5

We've all heard the term "It takes a village". Well when you have a child with a disability and especially a rare one, you are desperate to find that "village" to help you navigate your new, unexpected life. Rettsyndrome.org is that "village". This organization has helped me and my family and my daughter who has Rett syndrome find a new, amazing family, our Rett family. This is a community of other families who have the same struggles as we do and are excited and eager to help. It is a community of scientist who see our Rett angels as people who just want to get better and live a more full life. They are compassionate and are working incredibly hard to help find a cure for our Angels. It is a community of educators that know how smart and able a person with Rett syndrome is and will do what it takes to make sure other educators have the knowledge and the tools to effectively education our Rett Angels. It is a community of therapists available to work with, guide and encourage all those that work with a person who has Rett to help make for a better life. So you can see, Rettsyndrome.org is my Village. I don't know what i would do without them.

Charity4

Client Served

Rating: 5

I am a mother of a 14 year old beautiful and sassy Rett girl!!! When we got the dx of Rett syndrome right after her 2nd birthday I was at a loss, didn't know where to turn or what to do. Then rettsyndrome.org was there the help guide me, to help connect me to other Rett families and support in our state. They are amazing and I don't know what or where I would be without their devotion, support, love for the Rett girls and families and their continued push for the treatments and CURE for Rett syndrome!! From the staff to the doctors and researchers they are amazing

Client Served

Rating: 5

I believe in Rettsyndrome.org's mission of accelerating full spectrum research to cure Rett syndrome while empowering families with information, knowledge and connectivity. Rettsyndrome.org coordinates, cultivates, accelerates, and funds research that will produce a cure for Rett syndrome and reveal and develop treatments that will make the lives of people living with Rett syndrome richer and free of pain and discomfort. Rettsyndrome.org will assist families of individuals living with Rett syndrome by providing them with connections to critical and useful information, programs, services, and support from diagnosis to day-to-day life. Rettsyndrome.org will advocate for and raise awareness about individuals with Rett syndrome so the scientific and medical community, policy makers, educators, care givers, and the general public can more thoroughly know, understand, and be motivated to help the research efforts and individuals dealing with Rett syndrome on a daily basis.

3

General Member of the Public

Rating: 5

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!!

1 Andrea117

Client Served

Rating: 5

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!!

1

Client Served

Rating: 5

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.

1 James152

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

2

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1 Mickie M.

Volunteer

Rating: 5

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.

1 Chris164

Volunteer

Rating: 5

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)

1

Volunteer

Rating: 5

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/

Previous Stories
2

Client Served

Rating: 5

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!

Review from CharityNavigator

1 Connie46

Volunteer

Rating: 5

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!!

1

Volunteer

Rating: 5

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.

Leslie64

Volunteer

Rating: 5

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.

1 Paige N.

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 1

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!

Comments ( 1 )

profile

pnues 10/29/2012

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

1

Client Served

Rating: 5

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.

Review from CharityNavigator

Erica23

Client Served

Rating: 5

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~!

Review from CharityNavigator

1

Client Served

Rating: 5

IRSF is a very well run organization. Our family has worked with IRSF for nine years, to organize fundraising events and raise awareness of Rett Syndrome. There is a personal connection with IRSF staff and families/community members involved. My daughter has benefited from the information IRSF provides. The IRSF staff and board members all have a personal involvement and drive to raise funds to find treatments and a cure that will better the lives of those affected with Rett Syndrome.

Review from CharityNavigator

2

Client Served

Rating: 5

IRSF is a U.S. organization. My daughter is 31 years old and has Rett Syndrome. I have benefited from this organisation for years as one served by it. IRSF is the organization that serves families dealing with Rett Syndrome in all kinds of ways. It provides direct help for families to communiate with each other (on the Rettnet), it is a major funder of research to cure Rett Syndrome, and it is hosts major conferences for researchers and familiies to share information.

Review from Guidestar

1

Professional with expertise in this field

Rating: 5

As an employee of the IRSF, I am eager to share that we have a lot of big initiatives underway right now and I am excited to see what we uncover next! Our foundation is only as great as our supporters and our supporters are amazing. We value what they do for every facet of our foundation. We are lucky to have such a strong group of dedicated individuals who devote their time and energy to our cause! - Thank you! - Without you we would not have had the success we have been so fortunate to have!

Review from CharityNavigator