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"I'm sorry. There is no cure. Nothing can be done."
That is what a doctor told Tim Revell and his wife, Laura, when their oldest son was diagnosed with Duchenne Muscular Dystrophy.
"We knew nothing about Duchenne, and had never heard of it, when Timothy, was diagnosed," Tim said. "Six months after that, we decided to get involved. There is a key phrase we learned a long time ago: 'When I got busy, I got better.' That has become our rallying cry, and our goal is to save this generation of Duchenne boys."
Laura and Tim quickly determined that no parent should ever again be told that a Duchenne diagnosis was hopeless. As they discussed ways to help work toward a cure for Duchenne, they also met with a new doctor who took a decidedly more positive stance regarding Timothy's diagnosis. Tim said she recommended stretching exercises and night splints - an orthotic device that holds the feet in a comfortable position during sleep - as helpful treatments.
Tim and his wife began working with CureDuchenne, and that organization nominated him as a peer reviewer for the Department of Defense Duchenne Muscular Dystrophy Research (DMDRP) program. Through his advocacy work and his experience with the DMDRP, Tim said he is increasingly optimistic regarding research and progress toward better treatments and a cure.
"It's an honor to see some of the research projects up front. Some of them seemed very promising so I hope their funding results in furthering the process that much more," Tim said. "Peer review showed me there is hope out there and that telling the story of Duchenne is more important now that ever.
"Thanks to my peer review experience, I learned more about some of the details of research than I had ever known before," Tim said. "Right now, cancer gets a lot of attention, but some cancers can be cured, but with Duchenne no one is cured. The time is now and we need focus, money and wisdom in handling the funds correctly."
Underscoring the Revell's commitment to cure Duchenne, and CureDuchenne, is the recent news that their youngest son, Andrew, shares the same condition as his brother.
"Anything is possible with Faith and Hope. We have learned the value of perseverance and the love a parent has for their child," Tim said. "We have met some of the most amazing people and we know now that there is hope for a cure to Duchenne. It is just a matter of time, money and the right investment into research."
Last updated Wednesday, January 27, 2016