I’m not the most tech-savvy person. My wife makes fun of me for fumbling with the TV remote, and my RSRT colleagues have probably good-naturedly rolled their eyes once or twice at my tech-related questions. So when we developed RSRT’s crowdfunding platform, RettGive, I was a little nervous about how easy it would be to use and whether families would jump onboard to start campaigns to raise funds for the research.
Wow, was I wrong to be nervous. So far, 79 individuals and families from around the U.S. and the world have started their own RettGive campaigns. Combined, they’ve raised nearly $800,000. Remarkable! As a father, I thank and congratulate each of these families for taking action to help raise the funds RSRT needs to change all of our children’s lives.
Every dollar generated by RettGive matters. With the launch earlier this year of our three-year strategic research plan, Roadmap to a Cure, we have a clear fundraising goal—$33 million! The families who are doing RettGive campaigns should be very proud because they are playing a key role in chipping away at that goal. In fact, as I write this, we’ve just passed $11 million in contributions and pledges to Roadmap to a Cure, so we’re one-third of the way there. Much of this funding has come from events and from generous individual donors, but there has been a groundswell of new RettGive campaigns in the last few months, and they are making a big difference.
RettGive is a way for any family or any person touched by Rett Syndrome from anywhere in the world to get involved. It costs nothing. It’s simple and easy, and a campaign can be set up in any language. Technophobes like me, fear not. The most advanced thing you need to be able to do is send an email.
Campaigns have been started by parents, grandparents, siblings, aunts and uncles, cousins, and friends of affected families—anyone who loves someone with Rett or a related MECP2 disorder. These campaigns work so well because each one is personalized. It’s your and your child’s campaign, telling your story, with photos of your loved one, that you send out by email and social media to your network. I find the photos and what people write on their campaigns to be incredibly moving. They are expressing from their hearts, and it comes out loud and clear. You can explore all the campaigns here.
I think RettGive has also been empowering for families. Not only are they taking action for their loved one, but starting a campaign lets them share with friends and family what day-to-day life is like for them with Rett Syndrome. Some parents have even used RettGive as a way to let their networks know about their child’s diagnosis. Often, friends’ response to the news of a diagnosis is—what can I do to help? If they are hearing this news through RettGive, the answer is easy: support what will change lives—research!
Starting a campaign is so easy, and it’s a powerful way to be part of Roadmap to a Cure. If you’re not already involved in an event or fundraising for RSRT in other ways, I hope you’ll join this groundswell and start your own RettGive campaign. All it takes is an email to me.