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If Not Us, Who?

July 20, 2019

$26,019,402 That’s the amount that has been raised so far towards our Roadmap to a Cure goal of $33 million. That puts us just shy of 80% to the goal.

To say I’m grateful to the 600 plus families who fundraise for RSRT and got us to this point would be a gigantic understatement. These families, driven by their love for their children and grandchildren and siblings, are literally making this research happen. As the father of an afflicted 10-year-old daughter whose life, as well as 350,000 other lives, stands to be profoundly changed by these families’ actions, I’m grateful far beyond my ability to express in words. Every one of you 600 families should be proud. Your events—from galas to backyard barbeques—your RettGive campaigns, Facebook campaigns, and personal donations are propelling the research towards a cure.

There’s now less than nine months left in the three-year Roadmap to a Cure period, with $7 million still to raise ($6,980,598 to be exact). That $7 million is going to be critical to ensuring that all the priorities of Roadmap to a Cure can be carried out. So we need to raise these funds as quickly as possible. Reaching our fundraising goal is no layup. The last 20% of a campaign is notoriously the hardest funding to raise. Transcending any campaign is the fact that we have an imperative to exponentially grow fundraising for Rett research. The simple truth is the more funding we have, the faster the research advances to a cure. With some of the most respected researchers in the world now recruited by RSRT and working on this, we’re confident the scientific challenges that remain can be figured out. But lack of funding does hold us back.

The $26 million raised so far is the result of families starting events and crowdfunding campaigns that their networks support. Not a single dollar has come from someone who is unconnected to a family affected by Rett. It’s never been clearer that it’s up to us families. No one else will make this happen.

But here is the conundrum. Despite the immense promise of this research, families that fundraise for it are the exception, not the rule. The 600 families that fundraise for RSRT represent about 4% of all the Rett families in the US. Worldwide, far less than 1% of affected families are fundraising for RSRT.

I know all too well that Rett Syndrome comes with stresses and sometimes straight out physical exhaustion that can make taking on one more thing seem daunting. I’m with you. But I’m calling you to action. There’s just too much at stake here for any Rett family to sit on the sidelines and wait for others to do it. No intervention has the capacity to have as major an impact on our children’s lives as the research does. This is what can profoundly improve our kids’ and grandkids’ lives, and our own lives too. But only 4% of us are taking action. Four Percent! Imagine what we could do if we double or triple the number of families that are fundraising for the research?

If you’re not already involved with us at RSRT, I urge you to take the plunge and join us. Don’t wait. If more of our Rett community starts fundraising now, we have a greater chance than ever of eliminating this disorder. We’ve raised $26 million with 4% of our community fundraising. Let’s increase that percentage, show the world that the Rett community is in this to win it, and change our children’s lives.

To get started, email or a call me at or 609-309-5676. Together we can brainstorm different ways to take action:

  • Start an event in your town or city. An event can be anything you envision.
  • Join the committee of an existing event near you.
  • Do a RettGive crowdfunding campaign. It’s easy, it’s effective. I’ll take you through the steps.
  • Fundraise on Facebook. Just click on “Raise Money”.
  • Brainstorm other ideas. Have a connection to a foundation or a philanthropist? We can work together on a letter or email.

There has never been a more important time to do this. I look forward to hearing from you.