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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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Small Town, Big Heart

January 4, 2017Community, Fundraising, Success Stories

Hi everyone, so this is my very first blog! Ugh, Rett Syndrome! So after going through day-to-day life with Rett syndrome, you sit back and think, well now what? Do we just sit here and wait for a cure? For our family, sitting back and doing nothing wasn’t an option. We…

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The Joy and Ache of the Holidays

December 20, 2016Community

I want to join Monica and our trustees and staff in saying how hugely grateful we are at RSRT for support from so many people. From families that spearhead events, to parents and others who do RettGive campaigns, to state and international Rett organizations and those who work so hard…

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Rett Syndrome Awareness Month 2016

October 7, 2016Community

Rett Syndrome Awareness Month is here! It’s important to spread the word about what Rett is and what causes it; how strong and amazing our daughters, granddaughters, sisters, and nieces who struggle with Rett and related disorders are (although very rare, boys can also have Rett and they and their…

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A Quick Look Back and a Major Look Forward

September 26, 2016Community

RSRT launched eight years ago yesterday. Anniversaries can be an opportunity to look back at accomplishments, but also to define where and how we move forward. We have come a long way in these eight years. Rett research is in a much more promising and exciting place than it was…

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