Since it was launched last month, RettGive, RSRT’s new crowdfunding platform, has resulted in more than $60,000 contributed to research. Thirteen families from around the U.S. and the world have started campaigns. I’d like to thank these families for taking action. Beyond raising critical funds for the research, these campaigns also spread awareness about Rett Syndrome and what life is like when you have a child who struggles with it. If you haven’t had a chance, explore the campaigns and their powerful stories, photos, and videos.
I’m writing this post now to encourage more of you who are touched by Rett Syndrome and MECP2 Duplication Syndrome to start RettGive campaigns. Anyone can do it—parents, grandparents, siblings, aunts and uncles, friends. You can set up a campaign in honor of someone. Do one for your daughter’s, granddaughter’s, or niece’s birthday, or for your own birthday or anniversary. If you’re like me and you aren’t very savvy with technology (my patient RSRT colleagues will attest to this, and so will my wife who teases me about my battles with the TV remote), don’t worry. RettGive is very easy to use.
All you’ll need to get started is a short paragraph or two introducing your campaign (I can help you write this), a few photos or a video (done on a smartphone is fine), and a fundraising goal (I can also help with this). That’s it. I’m happy to walk you through it, which I can do on the phone in about 10 minutes. Once your campaign is set up, you distribute it by email and social media to as many people as you want. I bet you’ll be surprised at how eager your relatives, friends, and colleagues are to support research.
My reason for asking you to start RettGive campaigns is personal and urgent, but it’s no different from the reason that other parents and grandparents are doing campaigns and getting involved with us. My daughter, Eleanor, just turned seven. She is the light of my wife’s and my lives. Like all girls with Rett (and a small number of boys too who also live with this disease), she is full of personality, brightness, humor, and love. She makes us laugh every day, and her smile melts our hearts. But her childhood is slipping away. She has changed from a little girl to a young girl, and with that change I’ve glimpsed a new frustration from her at not being able to walk and talk. She is growing up, trying to emerge as her own independent person. Rett has taken so much from her already, and now it cruelly arrests her once again in her next stage of life.
I’ve met many other bright and beautiful girls with Rett, as well as several boys with MECP2 Duplication—they all fight this disease with the same strength and resilience that Eleanor does. But only one thing holds the promise to really change their lives—research.
Imagine how much faster we could move towards treatments and a cure if we had double, triple, and quadruple the number of RettGive campaigns. Imagine these families’ collective impact on the research and ultimately on all of our children. If you are not already involved in an event or fundraising for RSRT, I hope you will give RettGive a try. I’m here to help. Thank you.