When the Olympic Torch blazes across the UK on its way to the London 2012 Olympics, Margaret Bowler, founder and National Coordinator of the Myotonic Dystrophy Support Group (MDSG), will be one of the 8,000 inspirational individuals honored with escorting the flame along its route. Bearing the Olympic Torch is a great tribute for Margaret, whose own journey through life has been devoted to shining light on the needs of people living with myotonic dystrophy.
A nurse and midwife for 40 years, Margaret directed her energies to the cause of myotonic dystrophy in 1989 when her youngest son and husband were diagnosed with the disease. Frustrated by the lack of scientific research and inadequate knowledge in the medical services, Margaret has spent the last quarter century building the Myotonic Dystrophy Support Group, based in the UK, to help all the families affected by this rare genetic condition.
In response to a nationwide search last summer by the Olympic sponsors for people that had made a “real difference in their communities”, to participate in the Olympic Torch Relay, myotonic dystrophy researcher Dr. Helen Brownlee secretly submitted her name for the honor. The nominating letter cites Margaret’s special qualities that “made the impossible, possible” and reads in part:
“As National Coordinator of the Myotonic Dystrophy Support Group, she has achieved so much: commissioned the first lay book for families on myotonic dystrophy; sent 187 reassembled wheelchairs to school children with the disease in Bulgaria; raised the awareness of myotonic dystrophy through speaking at national and international conferences and participating in workshops; raised funds to support research on myotonic dystrophy, and most importantly has given families hope by bringing them together with scientists, researchers, clinicians, doctors and other families with myotonic dystrophy.”
To everyone’s delight, word came in early December that Margaret had been chosen from over 60,000 nominees to carry the flame on June 28 in Radcliffe-on-Trent, about 10 miles from where she lives in Nottingham. Dressed in a specially-designed white track suit with gold trimmings, Margaret will carry the flaming, 32-inch torch for approximately two tenths of a mile, while friends, family, church members, and supporters from the MDSG network cheer her along the route.
Says Margaret of the honor, “The amazing thing is that myotonic dystrophy will be publicized, along with my name, and awareness of the condition will be helped tremendously, for sure.” Already she has been interviewed on local radio shows, and stories have appeared in several regional newspapers as well. MDSG is gearing up to take advantage of this fantastic opportunity by printing green and white T-shirts for local supporters to wear in hope that TV cameras will glimpse them in the crowd. Margaret and everyone in the Myotonic Dystrophy community is extremely proud of this great honor and we all wish her the very best for this special day.
05/17/2012