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$14,230,348 and 2 cents

December 21, 2017

That’s the total that has been contributed so far in donations and pledges towards our three-year goal of $33 million, which is the amount that RSRT needs to carry out its strategic research plan, Roadmap to a Cure. Those funds represent the generosity and compassion of 11,167 individual and family donors. The size of their contributions has ranged from 5 dollars to 2 million dollars.

I join my colleagues, Monica Coenraads and Randy Carpenter, in saying how hugely grateful we are to every single one of these supporters. I have an 8-year-old daughter who lives with this disorder, so is it personal for me? Absolutely! I put on a good face most of the time, and that’s not hard to do in the presence of this wonderful child who, like all the children and adults with Rett I’ve met, is strong, resilient, funny, expressive, and loving. But another year has come and gone for her. Another Christmas is here where her hands will shake too much for her to unwrap presents. Another visit to Santa will be clouded by adults and children who stare at her a little longer than my wife and I would like.

These and so many other things throughout the year are painful to those of us whose children have Rett Syndrome. More importantly, I am ready. I’m ready for my daughter to be cured. And without any doubt she wants to be rid of Rett Syndrome. So, when you have 11,167 other people who share with you a dream, a vision for freeing your child and so many others from this disease, and a confidence that that vision can be achieved, you are grateful beyond any words that can be said.

I’ll say a few more things about those 11,167 supporters. Virtually every one gave because an affected family put themselves out there and fundraised for RSRT, either by holding an event, or crowdfunding on RettGive or Facebook, or reaching out in other ways to their networks. That’s a testament to the power that Rett families have to enable RSRT to carry out Roadmap to a Cure. Quite simply, it would not and will not happen without those families that fundraise for us. Rett may be rare, but Rett families are powerful beyond measure!

What’s going to need to happen for us to raise the remaining $18,769,651 and 98 cents? (Yes, I’m counting every dollar and cent!) We have two more years to do this, which is not a lot of time. While we’re 43% to the $33 million in just the first year, the next 57% is going to be the hardest part to raise. That’s because this year some of our most loyal and generous supporters, many of them Rett families, became Roadmap to a Cure Trailblazers. These are families and individuals who pledged $10,000 or more that they are paying out over three years. Their full three-year pledges are part of the $14.2 million committed so far.

What this means is that we need new Roadmap Trailblazers. We need others who love or admire someone with Rett Syndrome and who want to expand their impact on this research by becoming Trailblazers. We need the families that are already fundraising for us to continue what they do and do everything in their power to grow their events and campaigns. And we need families that aren’t currently fundraising for us to take action. These new families will be key to reaching the goal. A family that starts fundraising for the first time is like a hub with hundreds of spokes, each spoke representing a new supporter who can move us closer to being able to fully fund Roadmap to a Cure. But those spokes only start making a difference when the hub family takes action.

The research progress that has occurred this year is remarkable—the most I have seen by far in the nearly five years I have been working for RSRT and following the research. It happened because of every one of you who contributed or raised funds. Thank you.

What will 2018 and 2019 bring? I can’t wait to find out.

If you want to become a Roadmap Trailblazer, or if you’d like to start fundraising for RSRT, please contact me.