Skip to main content

We’re in This Together

June 12, 2018

Last March we announced an ambitious goal at RSRT to raise $33 million over three years to support our strategic research plan, Roadmap to a Cure. This is no arbitrary goal. Every dollar correlates with a research budget that aggressively moves the needle on potentially curative approaches. I’m excited and beyond grateful to report that we are close to hitting the half-way mark on raising that $33 million. To be exact, as I write this we’ve secured $16,260,172 in contributions and pledges.

A lot of work lies ahead, but it’s a good time to pause to thank those who have gotten us here. As the father of a nine-year-old daughter who struggles with this disorder, my words here don’t come close to doing justice to the gratitude I feel for the actions and generosity of so many people. Thank you to every affected family that has put time and energy into spearheading an event or serving on an event committee. Thank you to all who are doing RettGive or Facebook campaigns. Thank you to the friends of all these families who give to these events and campaigns. Thank you to our Roadmap Trailblazers who have made especially generous multi-year pledges. Thank you to the family-led Rett organizations around the world that support RSRT and share with us a vision for making Rett the first neurological disorder that can be cured. I hope every one of you knows how deeply appreciated you are and that without your efforts and support the research that RSRT spurs simply would not be possible.

Sometimes I wake up in the middle of the night worried about how we are going to raise the next $16,739,828. It’s a recognized fact that the second half of a fundraising goal is more challenging to meet than the first half. Then I remind myself that there’s no mystery here. We know what needs to happen. Raising the first half was accomplished by specific actions that more than 500 affected families have taken over the last 15 months. To raise the second half is going to take more families and supporters doing more of those same actions.

If you’re an affected family and you’re not already involved with RSRT let me be candid—WE NEED YOU AND WE WELCOME YOU TO OUR TEAM! I want to give you four actions you can take to become part of the Roadmap to a Cure team. I’m certainly not asking you to do all of these. But I am asking you to please consider choosing one of these actions that feels right to you. It may be one of the most important actions you ever take. Here they are:

  • Start an event. Events are a very effective way to raise funds. Your friends and family want to help, and this is a way to give them the opportunity to do so. Your event can be whatever you envision—a gala, a picnic, cocktails in your home, a happy hour, and lots more.
  • Join the committee of an upcoming RSRT event that’s near you. Joining a committee gets your name on the event webpage and invitations and gives you leverage to invite your network.
  • Start a RettGive campaign. This is RSRT’s crowdfunding platform. It’s super easy. We’ll do all the work to set the campaign up for you. Email me ( to get started.
  • Give! Every dollar matters and at RSRT we’re grateful for every single gift of every amount. I also want to tell you how to become a Roadmap Trailblazer. These are families and friends who have pledged $10,000 or more. For most of us, $10,000 is way more than we can write a check for. But you don’t have to do that. Trailblazer pledges can be paid out over three years, and on any schedule that works for you. Some pay them annually ($3,333 a year at the $10,000 level); some pay quarterly or even monthly ($278 a month over 36 months to reach $10,000). If it’s doable for you, please consider it.

I’m a parent. My daughter gives me immeasurable joy and love. I won’t sugar coat it though—Rett is hard, emotionally and physically. It comes with a lot of daily challenges that my fellow Rett parents know so well. So when I ask you to take one of these actions, I don’t do it lightly or without full recognition that there’s a lot on all of our plates. I do ask though, because I see a light at the end of a long tunnel. That light is our children’s lives profoundly changing, and every family that takes one of these actions expands that light.

To take action or to discuss any of the four options above….please click below to contact me.