Over the last few weeks you have heard a lot from us about Coach To Cure MD, our national event taking place on (and around) September 26. Events are already happening at high schools and universities, emails and letters have been sent out, parties are being planned, as we gear up for the biggest spotlight that has ever been shone on the Duchenne community...
But how does Coach To Cure MD help our sons? Like PPMD, the money raised by Coach To Cure will help our kids in a comprehensive way, contributing to our robust research portfolio, ongoing advocacy strategy, updating care considerations, and educating the general public.
Did you know that several schools participating in CTC have been the recipient of grants from PPMD? As part of our End Duchenne Grant Award Program, Duchenne researchers at some of the best universities across the country have received funding so that they can continue to improve their work and go on to receive government grants. Already, researchers at Brown University, University of Florida, and UCLA have received End Duchenne Grants. And as most of you know, our Scientific Director H. Lee Sweeney calls University of Pennsylvania home for Sweeney Labs where Lee has spent years focused on Duchenne research. Money raised by Coach To Cure MD this year will further these research initiatives, as well as the work of scientists we may not be aware of yet, but who are beginning to change the landscape of Duchenne in their own way.
PPMD is already starting to prepare for our Annual Advocacy Conference in Washington, D.C. in February. The voice of our community on Capitol Hill is crucial, and Coach To Cure MD has proven to be a great way for Members of Congress to introduce Duchenne to their constituents. Our friends at Cornerstone will be handing information about Coach To Cure to each office on the Hill, asking politicians to champion Coach To Cure and excite their towns to support the schools supporting us.
Arguably Coach To Cure's greatest role is what it does to raise awareness. One of the biggest struggles we face as a community is lack of knowledge by, well everyone, quite frankly, who's life has not been directly affected by this horrible disease. What we noticed last year was that the participating coaches really began to learn and understand what Duchenne is, what a Duchenne diagnosis means. They shared that information with their teams, their campuses, and the media. That awareness has spread and this year we have over 300 universities involved (that's 100 more than last year and the list keeps growing!). There was great interest from high schools across the country as well, so this year we have enlisted their support. To date we have almost 100 high schools involved. We have a fantastic video that has been spread on the internet and posted on school websites. Educating the public is as important a goal for these coaches as raising money.
With increased awareness and an educated public, things happen, changes happen – accommodation, interest in improving care, support for research and increased attention to this urgent need. Coach To Cure is not the cure we all pray for. But it certainly is one of the means to that end. If you have not gotten involved in Coach To Cure in some way, please visit the site and figure out how you can join our team. It can take as much or as little time as you have. We can't let this opportunity pass us by without each of us doing our part to maximize awareness.
P.S. The clock is running! Visit Coach To Cure MD today and do what you can to end Duchenne!