Following Zoey’s diagnosis, I also had great people from several organizations reach out to me, including Monica Coenraads and Tim Freeman from RSRT. I was immediately impressed by their knowledge of the research and their dedication to funding quality research toward treatments and a cure for Rett. RSRT has a very streamlined approach, prioritizing the research avenues that are showing the most promise, and 96% of the money raised goes directly to research. Although we feel that other organizations do great work and that family support is important, we decided that we would like any money we raised to go directly to curing our daughter and other girls with Rett as quickly as possible. RSRT funds several projects that target MECP2 specifically, which theoretically would have the most profound effect on our girls’ quality of life. They fund projects for symptomatic treatments as well. Although RSRT’s main focus is not on family support, Monica and Tim are more than willing to speak with parents and our family has connected with several other families who are involved with RSRT, online, at fundraising events, and at informal gatherings.
RSRT launched RettGive, their crowdfunding site for Rett research, just in time for Zoey’s 2nd birthday in July, and we decided to start a campaign. It was very easy to do, and we were overwhelmed by the generosity of our family and friends. Zoey’s grandfather is a retiree from the Hershey Company, and many of his former colleagues donated to the cause, and the company matched their contributions. We also received many donations from people with whom I am connected on Facebook, even though many of them have not seen me for years. We received donations in many different amounts, and it all added up to over $21,000, which we could not be happier with! We chose to do a RettGive campaign instead of an event, simply because we were overwhelmed by our new diagnosis and because our family and friends are so spread out that we were not sure an event would have a good turnout. We do hope to join with other families in the future to do an event and raise even more money, but if enough families start RettGive campaigns and raise even a couple thousand apiece, the total amount raised could have a huge impact. Every dollar counts!
Some may think that we are living in a fantasy world and are in denial about our daughter having a lifelong disability. I will admit that that thought went through my head when I first heard the word “cure,”, until I read RSRT’s website and talked to Monica about the research. There is substantial evidence that a cure is within reach for our girls. In the meantime, we are doing everything in our power to give Zoey the best life possible, keep her in the best shape we can, and just enjoy her, but we want so much more for her, and research is the way to make it happen.
Deanna & Matt Adair