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A Kick in the Gut to Rett Syndrome

January 12, 2024
First Pediatric Patient Dosed in Taysha US Clinical Trial

Dear Friends,

I want to thank everyone who donated to RSRT in 2023. Your generosity resulted in a total of almost $8.2 million from 8,962 separate donations.

This support from our community was immediately put to work on behalf of those with Rett syndrome. In December, RSRT’s board approved $9.4 million in awards to very exciting research projects. That was in addition to $900,000 that RSRT awarded earlier in the year. That $10.2 million is a record for the most dollars RSRT has ever awarded in a year to research. Those awards were made with a tremendous amount of strategy and thought by our science team. You’ll hear more details about this soon. The point now is that every dollar you contributed in 2023 is driving forward genetic-based research that has the capacity to truly change lives.

I thought you, our community of Rett families and donors, might be interested in the breakdown of where our funding at RSRT comes from. In 2023, roughly 65% of our funding came through events. There was a big range of what those events looked and felt like. There were galas in big cities; beer or buffet events in small town parks or community centers; happy hours in homes or restaurants; picknicks in backyards; and lots more. What they all had in common was, 1) they all mattered! And 2) they were all spearheaded by parents or grandparents or others who have a loved one with Rett.

About 20% of our support came from especially generous gifts or pledge payments that were unrelated to events. All of these came either from Rett families or from a friend or relative of a Rett family.

Another 9% of donations in 2023 came through crowdfunding campaigns, all of them launched by Rett families or their friends. Many were personalized campaigns on our RSRT crowdfunding platform RettGive. Other families did campaigns on Facebook.

Finally, about 6% of our funding came from special campaigns that RSRT launched. These included our Giving Tuesday campaign, which raised nearly $70,000; and our year-end matching campaign, which resulted in over $350,000 for the research.

Approximately 85% of our funding in 2023 came from the US; 15% came from international sources. International support came largely from Rett organizations in countries such as Israel, Germany, and the UK that raise funds in their home countries and then distribute some or all of it to RSRT. Other international support came from families around the world that did RettGive crowdfunding campaigns.

There were some especially poignant gifts made in 2023. Many were made in memory of a loved one or in honor of a child or grandchild with Rett. Our Chief Medical Officer at RSRT and his wife made a very generous contribution, demonstrating how deeply confident he is in the organization and our research program. One gift made at the end of the year that really has been on my mind came from a woman who recently passed away from cancer. She had arranged for RSRT to receive a gift before she passed.

As the father of a 14-year-old daughter who struggles every moment of every day with this disorder, every donation to RSRT matters a great deal to me. On most days, my daughter, with the remarkable resilience that characterizes every child and adult I’ve met with Rett, battles this disorder with a smile and a sparkle in her eye. But there are days when Rett gets the better of her. New Year’s Day was one of those days. It was bookended by episodes in the morning and evening of uncontrollable shaking and intense hand motions, and tears that silently rolled down her cheeks. On days like that, donations made to RSRT feel like more than an investment in her and in the research; they feel like (belying my pacifist nature) a kick in Rett syndrome’s gut for what it does to my daughter and so many others. I know my fellow Rett families understand this feeling. In 2023, our donors delivered some good kicks to Rett, and I appreciate it more than I can adequately express.

The research that RSRT is spurring has greater momentum than it ever has before. But that momentum requires funds more than ever to fuel it forward. If you are a family affected by this disorder and you’re not involved with us yet, I hope you’ll make a resolution in 2024 to join us. Do crowdfunding on RettGive, start an event or get involved with an existing event. Contact me and I’ll work with you every step of the way. Invest in it. Take your kick at Rett syndrome. We need your help to build on the research momentum and change our children’s lives.

Thank you! My warmest wishes for a joyous, peaceful, and productive 2024.

Tim Freeman
Chief Development Officer