Colleen and Sean Reilly, co-founders of Claire’s Crusade, were as shocked as any parents would be, learning that their (then) one year old, Claire (now five) was diagnosed with Rett Syndrome. Having never heard of the disorder, they learned the hard way just how rare Rett is. It’s so rare that it only affects 1 in 10,000+ girls. Currently, there is no cure.
“Trying to get answers, trying to get help, trying to get direction was hard, but coming to the realization of what the diagnosis really meant for Claire, and us as an extension, was harder,” shares Sean VP and COO of the nonprofit. “Processing and understanding that there was no cure was just demoralizing. We made a choice not to sit back, but to be aggressive and do everything we could to positively impact girls like Claire, suffering from Rett Syndrome and the families like ours, struggling to provide these girls with a better quality of life. Rather than sit on the sidelines, we wanted to get into the game, so to speak, and lead the charge to find a cure for Rett Syndrome. Claire’s Crusade was founded as a 501c3 nonprofit organization a few months later.”
Claire’s Crusade is dedicated to raising funds for treatment of this debilitating neurodevelopment disorder and support cutting-edge research efforts to develop a cure. The organization is committed to increasing awareness and providing resources for families faced with the uncertainty this affliction can bring.
“Being as rare as Rett Syndrome is, awareness is key. Every new person that hears about Rett Syndrome or learns something new about Rett Syndrome is a person who may want to get involved in some way — a potential donor, volunteer, etc. — and help Claire’s Crusade achieve our mission,” says Sean. “Rett Syndrome is the only disorder of its kind with a known cause. It’s also the only disorder of its kind that has been cured in animal models. Researchers and scientists are close, they’re on the cusp of a discovery that will change the lives of so many, potentially even beyond those with Rett Syndrome!”
2016 is the 5th consecutive year Claire’s Crusade has partnered with the Rite Aid Cleveland Marathon for Race Against Rett Syndrome. As an official charity partner, Claire’s Crusade organizes a team of volunteers that staff a water stop along the race course to keep runners hydrated and motivated. Claire’s Crusade also organizes a team of race participants; runners and walkers of all ages participating across all events (kids’ run, 5K, 10K, half marathon and the marathon) during race weekend. In total, Team Claire’s Crusade has exceeded 100 people in each of the previous four years, and 2016 is no exception. Each year, the goal is to raise a minimum of $10K as a team. With a little more than a week before the race, they’re about 50% to the goal — but climbing!
The deadline to register for the Marathon as part of Team Claire’s Crusade is midnight on Fri 5/8. Registration is done online HERE. For those interested in joining Team Claire’s Crusade, be sure to select Claire’s Crusade as the group you wish to join when registering.
The good news is that you can help Team Claire’s Crusade still reach their goal. If you or someone is already registered for the Marathon event but would like to participate as part of Team Claire’s Crusade, Sean and Colleen can arrange for that to happen. Just send an email to firstname.lastname@example.org with your name, shirt size, the race you plan to run and the email you used to register. With that, they can work with marathon staff and have you added to the Claire’s Crusade Team — and that’s a beautiful thing!
[written by Kendall Embrescia-Hridel]