In 2020, with tremendous thanks to the Rett families that fundraise for us, RSRT successfully completed its $33 million strategic research plan, Roadmap to a Cure. This plan was aptly named. It resulted, literally, in a roadmap to guide RSRT and its funded researchers to a cure. When Roadmap launched there were three potentially curative programs in the pipeline. Today there are fifteen. That’s progress. That’s a map with fifteen roads heading towards a cure. We don’t know yet which road will reach the destination, but one is sure to, and they are all being driven as fast as possible. I encourage you to go to our accomplishments to see more. You’ll get a sense of the huge impact of that $33 million that was raised by families.
This past fall we announced a new phase of our research called CURE 360 to take the critical next steps. CURE 360 accelerates our curative approaches and, importantly, lays the groundwork for biotech and pharma companies to pick up this research and advance it to clinical trials. This is already happening. Three years ago there were zero companies with Rett programs. Today there are six, all working towards clinical trials, with more on the way.
Our momentum right now is stronger than it’s ever been, but we have to keep our foot on the accelerator. The biopharma companies currently working on Rett are focused on three of our curative strategies: gene replacement, RNA editing, and gene editing. It’s imperative that we push the lab science ahead in other curative strategies—MECP2 reactivation, protein replacement, and RNA trans-splicing—and facilitate companies taking them on too. We need as many shots on goal as possible to get to a cure.
I’m going to be blunt here. Money is the foot on the accelerator. It’s what’s needed to fuel our momentum in CURE 360. So let’s talk fundraising. During Roadmap to a Cure we not only prioritized our research approaches, we also got more efficient and smarter about fundraising. We learned what works and we learned what doesn’t work. What became abundantly clear is that there’s no magic bullet. No big foundation or corporation is going to come in like a superhero and fund this. The fact is that funding for Rett research comes when Rett families take action and ask their networks to support it. That’s what worked for Roadmap; that’s what will work for CURE 360. You’re the superheroes when you act. And the more of you who act, the faster the research can change lives.
But we’re in a pandemic! How do you raise funds in this time of social distancing? We’ve got a new way to do it that I think you’re really going to like. It’s social, it’s fun, it’s impactful, IF YOU DO IT. It’s called Cocktails for a Cure. It’s your own Zoom call “event” that will let you be with friends and family (virtually, of course) while making a difference to the research. In fact, I think this way to raise funds is going to be here to stay after the pandemic is over. It can be done from anywhere in the world and it costs nothing.
Cocktails for a Cure is your own Zoom call that you invite your network to but with extra features. Your Zoom call will have overlayed donation buttons that go directly to RSRT, so it’s easy for people to make their contribution before, during, and after your “event”. There’s even an option for people to contribute by text. We also track all your supporters and give you a spreadsheet so you can thank everyone. And don’t worry about the technology; we’ll set the whole thing up for you so you can concentrate on having fun with family and friends.
You might get 15 people to join your Cocktails for a Cure; you might get 115. It’s all good. I envision that each “event” will have a signature cocktail. The recipe for the cocktail can be provided in your e-invitation so everyone is ready to concoct their own drink at home as part of the fun. If your network’s not into alcoholic drinks, no problem. Mocktails for a Cure works just as well. If you like you can also send a recipe for an easy snack that people make ahead of time to enjoy all together.
It can all be personalized; maybe you want to call yours Cocktails for a Cure with the _____ Family. We can work together on a program. It might include you talking for a few minutes about your child. You might decide to show a special video or some pictures. I’d be happy to join your Cocktails to thank your supporters and say a bit about the research. Maybe you have a friend who’s a musician who’d be willing to perform for a few minutes. There are no rules. Each “event” will reflect the tastes of the family that’s hosting it. Your network will likely be thrilled and grateful to have something social to look forward to.
The impact this has on the research will only be as big as the number of families that contact me to hold their own Cocktails for a Cure. So please don’t wait. Contact me at firstname.lastname@example.org or 609.309.5676. (By the way, Cocktails for a Cure isn’t the only way to raise funds for the research during the pandemic. Crowdfunding, either on Facebook or on RSRT’s platform at www.RettGive.org, is also very effective and easy. If this sounds right for you, just contact me to get started.)
I hope we get lots of families to jump on board. I think you’ll be surprised at how enthusiastically your friends will want to participate and contribute. Everyone’s especially eager right now to see other people and support a meaningful cause. Doing your own Cocktails for a Cure is a way for you and your network to do both of those things. I’m excited to hear from you.