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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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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 Phone Call

December 13, 2016Fundraising, Success Stories

Our precious daughter, Zoey, was diagnosed with Rett Syndrome on May 13, 2016 at 21 months of age. Although we knew something had to be causing all of her delays and slow progress, we were absolutely devastated by the news that it was something as debilitating as Rett. At our…

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RettGive Spotlight: A Father’s Day & Birthday

November 27, 2016Fundraising, Success Stories

Ever since our daughter Ema was diagnosed, we always wanted to do our part to raise funds for the Rett Syndrome Research Trust, with the ultimate goal of helping to find a cure for Ema and the hundreds of thousands of girls like her. We’ve always had great admiration and…

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Event Spotlight: Happy Hour to Help End Rett

October 28, 2016Fundraising, Success Stories

I met Shawn and Kristen Connor and their beautiful daughter, Brynn, over three years ago. Brynn had recently been diagnosed with Rett, so it was a difficult time for them. I know firsthand the shock and fear that come with a diagnosis, and I saw the devastation in their eyes….

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Rett Give: Are You In?

July 27, 2016Community, Fundraising

Since it was launched last month, RettGive, RSRT’s new crowdfunding platform, has resulted in more than $60,000 contributed to research. Thirteen families from around the U.S. and the world have started campaigns. I’d like to thank these families for taking action. Beyond raising critical funds for the research, these campaigns also…

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You Don’t Know Bo?

May 6, 2016Community, Fundraising

In August of 2014, at the age of two, our son Bo was diagnosed with MECP2 Duplication Syndrome. Our devastation was something I do not ever want to experience again. Our outlook quickly improved, however, when an internet search led us to The 401 Project and the RSRT MECP2 Duplication…

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