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October: Rett Awareness and So Much More

October 10, 2017Community

I think most of us Rett parents compartmentalize our life events according to “pre-Rett” and “post-Rett”, I know I do. In my “post-Rett” life October carries significant importance. First and foremost my daughter Chelsea was born in October of 1996. October 10th to be exact. Today she turns 21 years…

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How Rett Changed a Granddad

October 4, 2017Community, Fundraising

Like other grandparents who faced a diagnosis of Rett Syndrome, I was initially devastated. My granddaughter Magnolia would not have the life I dreamed for her. I wouldn’t see her walk down an aisle or celebrate those typical life events most grandparents get to savor. The impact on my son,…

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Twice the Heartache…Twice the Love

September 9, 2017Community

I have a soft spot for Rett grandparents. Having witnessed my own parents come to terms with Chelsea’s diagnosis I saw firsthand just how painful and raw that journey was. In a sense grandparents bear twice the pain that parents do. They ache for their children and they ache again…

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2016: A Year in Review

July 19, 2017Community, Fundraising

Thanks to our almost 9,000 donors we raised a record amount in 2016. We’re putting that money to work on behalf of everyone struggling with Rett Syndrome and related MECP2 disorders. We invite you to view our infographic. Thank you to all our supporters! You can also download the infographic here.  …

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Finding the Words

June 26, 2017Community, Fundraising

I told my daughter, Eleanor, the news. I had just put her in bed for the night. Her arms had stopped moving and she was breathing quietly. She stared into my eyes with that intense look that only the parents of a daughter with Rett Syndrome can understand—intelligent, lucid, expressive…

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Key Questions to Ask When Considering Clinical Trials

February 28, 2017Community, Research

We live in exciting times. It seems like almost every day, breakthrough scientific discoveries provide novel insights that could result in new and better ways to treat your children. These advances are clear signs of progress and reasons for optimism. Companies are leveraging these scientific insights to initiate clinical trials…

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Of Mice and Rett: Novel Therapeutics & Community Support

January 27, 2017Community, Research

You — the parents, grandparents, and families of children with Rett Syndrome — know more than anyone the devastation that Rett brings and the frustration of not having medications to address the onslaught of symptoms your child faces every day. While I don’t have a child with Rett, I am…

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