I just came across this story and I thought it was worth sharing. We have chose to support Charley’s Fund but there are very many other worthy charities and creative efforts aimed at fundraising to support research aimed at finding an effective therapy and even a cure for DMD. Traditional fund-raising efforts are ongoing, but sometimes the disease and those suffering from it get more publicity and recognition from some of the less traditional efforts. Darius Goes West is a great example of this.
Another is Climb to Cure Duchenne. Several climbers from all over the U.S. will climb Mt. Rainier in Washington to raise awareness and, more importanly, funds for Cure Duchenne. They hope to raise over $170,000 for the cause by having each of the 11 climbers collect $1 for each of the 14,410 feet of mountain that they will climb. The story referenced above is specifically about one of the climbers, Thomas Seoh. I wanted to share some of the quotes from the story because they express the hope and the sense of urgency that is swirling around DMD therapy at the moment. He has experience in biotech and specifically in searching for treatments for DMD, so his thoughts certainly carry some weight.
“This is a particularly anxious and hopeful time because several experimental medicines are working their way through clinical trials and financial support now can help this generation of boys.”
“Some of them will be on the market in a few years.”
“We’re not looking for something that could be a cure someday. We are seeking funds to apply to research that can help this generation of boys.”
If you can, please help. Donate to Charley’s Fund or buy some merchandise. Buy a Darius Goes West DVD. Buy the Live Inspired App. Every bit counts and every bit helps, and our collective efforts can make a difference for boys like Charley and Darius and all of the rest. The time is now.