Four dads whose sons have Duchenne muscular dystrophy will climb Clingman’s Dome, the highest peak in the Smoky Mountains, on June 30 as part of the annual “Climb to CureDuchenne: Pick Your Peak” event happening nationwide. People across the country are climbing a mountain, hill or tall building to increase awareness and raise funds to find a cure for Duchenne muscular dystrophy. CureDuchenne, a nonprofit organization that raises awareness and funds research to cure Duchenne muscular dystrophy, organized the event.
Todd Crawford, Nick Ware, Jimmy Dotson, and Brad Nance, are Duchenne dads climbing for their sons Mackenzie, 12, Alex, 16, Luke, 7 and Caleb, 6. It is statistically remarkable that four dads, who all work in the Chattanooga information technology industry, all have sons living with Duchenne, a rare and devastating muscle disease that affects 1 in 3,500 boys. Crawford and Dotson both work at Unum; Ware works for Lawson and is a contractor at Unum; and Nance works for Northwest Georgia Bank in the IT department.
Crawford created a Climb to CureDuchenne team called “CALM Dads,” which represents the first initial of each of their sons’ names, to raise much needed funding for scientific research to find a cure for Duchenne. Crawford’s son, Mackenzie, was diagnosed with Duchenne at the age of 4. Mackenzie is part of a new Glaxo Smith Kline Phase III exon skipping clinical trial. CureDuchenne was an early supporter of Prosensa, the biotech company that developed this drug before licensing it to GSK.
“We are hopeful that this new drug will be successful and provide a treatment that stops the progression of this awful disease long enough for a cure to be found,” said Crawford. “I’m hiking with a great group of dads who want to find a cure for Duchenne. We plan to raise money to continue to fund promising research to help find a cure for our sons and the other 300,000 young men living with Duchenne.”
Boys are usually diagnosed with Duchenne by the age of 5, in a wheelchair by 12 and most don’t survive their mid-20s. The funds raised for Climb to CureDuchenne support the most promising research projects aimed at treating and curing Duchenne. To donate to Climb to CureDuchenne and support the “CALM Dads” team, click here.
“We appreciate everyone who supports Climb to CureDuchenne and are climbing on behalf of the those impacted with Duchenne who can’t,” said Debra Miller, founder and CEO of CureDuchenne. “Donations will support research projects that are so close to treatments to save our sons’ lives.”
CureDuchenne, a national nonprofit organization located in Newport Beach, Calif., is gaining international attention for its efforts to raise funds and awareness for Duchenne – a devastating and lethal muscle disease in children. One in every 3,500 male births results in a child being afflicted with the disease. More than 24,000 boys are living with the disease in the United States alone, and most will not survive their mid-20s.
The funds CureDuchenne raises support the most promising research projects aimed at treating and curing the disease with the help of its distinguished panel of Scientific Advisors from around the world. To date, seven research projects have made their way into human clinical trials with support from CureDuchenne. This accelerated push to move research from the lab into clinical trials could save the lives of those afflicted and give them hope for halting the progress of the disease. Very few health-related nonprofits have been as successful in being a catalyst for human clinical trials.