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How You Can Take Action for Rett Research: The Only Wrong Way To Do It Is To Not Do It

December 12, 2022

It has been another whirlwind fall for fundraising at RSRT. The result has been dollars coming in that are critically important to enabling RSRT to push ahead with the boldest research approaches. All of that fundraising is thanks to the Rett families that have taken action. I’ve been fortunate to get to work with many of them, and I’ll admit there have been some hectic moments, a few late nights, and occasional differences of opinion that happen anytime people collaborate on things they care about. There has also been plenty of laughter and camaraderie, as well as a few tears shed over the shared challenges we face as Rett parents. But the prevailing emotion for me is of deep gratitude to these families. Every dollar they raise advances the research. Every dollar they raise matters to their children, to my daughter, and to 350,000 other children and adults who, with remarkable strength and bravery, battle this disorder every moment of every day.

The range of actions these families have taken shows that raising funds for the research is not one-size-fits-all. Since September, families have held events in Los Angeles, New York City, Washington, D.C., San Francisco, Seattle, Philadelphia, Austin, and Albany, N.Y. These events ran the gamut in their size and vibe. Two were big galas, and a suit and tie were in order. Another had a theme of “Jeans & Jewels.” Another was outside under a tent, like a big county fair; I wore a T-shirt and brought my dog along. The point is, there’s no right or wrong way to do it. Fundraising success comes in many shapes and sizes. What’s important is that these families did it! They held events and raised funds. All told, those events raised a total of $3,102,080 to fuel the research. That’s just our fall events; there were others held in spring and summer.

Other families started crowdfunding campaigns on RSRT’s platform Since September, 19 families have launched campaigns. They did this from around the US and the world — California, Colorado, Michigan, Pennsylvania, West Virginia, Maryland, Kansas, Florida, as well as Spain, Serbia, and the Netherlands. Together, these campaigns raised $247,362. Still other families raised funds on Facebook. Over the last three months, Facebook fundraising resulted in $49,491 for RSRT.

I didn’t round off those numbers to make another point — every dollar makes a difference. So, this is a big thank you to the Rett families that took action. I thank you as RSRT’s Chief Development Officer, but, more importantly, I thank you as a father. My daughter became a teenager this year, which is bittersweet. Rett took so much from her childhood, and now I want it to stop taking from her. RSRT has made leaps and bounds towards making that a real possibility for all our children. The first gene replacement clinical trial for Rett, now recruiting patients, would not be happening were it not for RSRT. That’s progress. That’s the result of the dollars that families have raised.

It's more important than ever that we keep this research momentum going, and that RSRT has the resources to do that. That’s why this is also a call to action to Rett families who are not yet fundraising for RSRT. It’s in your power to help us speed this research to what we all want with all our hearts — for Rett to stop taking so much from our children and loved ones. We can do this, but we need you. All it takes to start is to call or email me at 609-815-5102 or

Thank you.