“15,000 boys in the United States - 300,000 worldwide - will lose their life before they reach 25 years old. Many, many more will die as teenagers.  Every muscle in their body is going to waste away. Every single muscle in their body, and 90% of the world has never heard of Duchenne Muscular Dystrophy.  You’d better believe I will use everything in my power to change that.” Kate Miner Moebel, grandma to 10-year-old Shepherd.

“My grandson was five when he was diagnosed with Duchenne Muscular Dystrophy.  There were signs, finally noted by a physical therapist, but we didn’t see them - he had enlarged calf muscles and an overall slowness to him.  We just thought that was Shep.”  

Kate threw herself into understanding her beloved grandson’s condition. She learned that 99% of those affected are boys, and it's the most common and fatal childhood form of muscular dystrophy. “There has been great progress in heart and respiratory therapies, and steroids are getting more precise, but these things only offer our boys an improved ‘quality’ of life - if you can call it that.  There is no cure for this hideous muscle-wasting disease.”

Deciding that her role would be to focus on raising awareness of Duchenne, and fundraising, Kate has linked arms with CureDuchenne, a non-profit based in Newport Beach, CA (cureduchenne.org) CureDuchenne is the global leader in research, patient care, and innovation for improving and extending the lives of those with the disease.   CureDuchenne is ‘committed to improving the lives of everyone affected by Duchenne through accelerating research to find the cure, improving care and empowering the Duchenne community.’ The organization coordinates scientists, physical therapists, parents, fundraising teams, and family support resource coordinators

“I believe there will be a cure in my lifetime - with the advent of gene therapies, exxon skipping studies, and numerous other things going on, most of which I can’t pronounce or explain.  I also believe that curing this genetic disorder will lead the way to a cure for loads of other genetic diseases.”

Kate continues, “It's a blessing to be living in DFW. UT Southwestern and Cooks Children both have dedicated facilities supporting the MD community, even specializing in DMD.  We also have a clinic in Denton headed up by neurology and neuromuscular expert, Dr. Diana Castro."

In her efforts to raise awareness, Kate has taken on the role of Event Chair for CureDuchenne’s “Champions In Dallas”.   Taking place on Thursday, October 3, Kate and her team have planned what sounds like an evening not to be missed.   

Honorary Hosts include former Dallas Housewife, Cary Deuber CFNFA, CANS and Dr. Mark Deuber, real estate heavy-hitter Lucinda Buford, and William Nobel, of William Nobel Jewelers, with the Dallas String Quartet doing what they do best, all night long.   Five local chefs you need to know will be offering their finest, and Napa Valley will be on hand to pour something lovely for you.  All of this against the backdrop of one of Dallas’s finest contemporary galleries, DHV Artworks.   

Lastly Kate remarks, “You know, Duchenne is an unknown, non-sexy disease.  There are no colorful ribbons, no famous athlete attached, though Koby Bryant did what he could - I’m here to make it known.

I will not outlive a grandchild.  I will go down swinging.”