Rett Syndrome Organizations

There are a number of charities related to Rett Syndrome, they are populating my sidebar. It’s a little confusing the relationships between all of them. When you make your donation to help out little (and big) girls like Edda, it would be nice to know which organization you are giving to and how their philosophy may differ. There are many, many hardworking people at all these organizations and I can not begin to tell you how much time and energy goes into everything that they do. Without these organizations, I would be lost.

A little history:

About 30 years ago, a woman named Kathy Hunter, started an organization called the International Rett Syndrome Association (IRSA). Her daughter, Stacie, was the 6th person diagnosed with Rett Syndrome in the United States and starting from her kitchen table, she knit together an organization that was very family oriented. Parents of daughters who are now in their 20s speak fondly of that time – remember, no internet, no instant messaging, no cell phones. It was really to Kathy Hunter’s credit that she got all these far flung people together to form a community. IRSA started the yearly family conference, which I have attended twice now. I’ve found them to be uplifting and inspirational.

Then about ten years ago, a group of parents were disappointed with the lack of research that was being done to understand and cure Rett Syndrome, and a second organization formed, the Rett Syndrome Research Foundation (RSRF). This organization, co-founded by Monica Coenraads a year after her daughter, Chelsea was diagnosed. This organization raised over $11 million dollars over the past 10 years and led to the amazing mouse model reversal of Rett Syndrome. Their focus was to to fund research and do targeted experiments to find a cure for Rett Syndrome. It was under the auspices of RSRF that last year, I participated in the Fairfax, VA stroll-a-thon which raised $100,000 for research.

This past year, IRSA and RSRF merged to form the new International Rett Syndrome Foundation (IRSF) and this umbrella organization is taking the family care aspect and the research aspect into one centralized organization. Lots of people from both IRSA and RSRF remained on the board of directors of the combined organization. It is under this organization that I have visited the offices of Van Hollen and Kennedy to ask for money to fund research for Rett Sydrome.

However, during the merger, both Kathy Hunter and Monica Coneraads left the new organization. These two women are both energetic and passionate women, I knew that they would not be quiet for long.

Kathy Hunter has started, a family support forum where you can “find the facts you need, and the care and comfort you so richly deserve in meeting the challenges of Rett syndrome”.

Monica Coneraads has started the Rett Syndrome Research Trust (RSRT) this past year, and their website just went live! This organization’s focus is to deliver clinical trials of a novel treatment strategy in 5 years. Two women, Ingrid Harding and Kelly Butler (who are my own personal daily source of inspiration) are working hard at Girl Power 2 Cure, which raises funds on behalf of RSRT.

Whew! Are you still with me? It is my biggest fantasy that Rett Syndrome be cured. Not a day goes by without me thinking about Edda being able to control her body and be able to speak! What a day that would be.


2 thoughts on “Rett Syndrome Organizations”

  1. In the real world, things are not that straight-forward as advertized, especially when money & power are involved.

    There is a folk story in China, one monk up in a mountain has to fetch water himself everyday. Two monks up in a mountain would most likely share the fetching. Three monks, one particular monk, maybe younge; maybe be more innocent; maybe more warm-hearted; maybe more idealistic and would like to build a better world in the name of Buddha; or simply is the weakest has to fetch water everyday for all three of them, rain or shine.

    Those other two monks probably will tell this poor one that a wonderful heaven somewhere is waiting for him because of his good deeds.

    In short, idealistic is a good thing but be prudent.

  2. Doris, this was a great post and summary of Rett organizations! Thank you…it clears up a lot of questions for me. Edda looks really comfy snuggling with her new kitty.

    Brooklyn’s Grammy

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