Roseann Van Duren has a reluctant, but necessary, relationship with the Muscular Dystrophy Association (MDA). It began about 40 years ago when her brother, Michael D'Antonio, received a diagnosis of Duchenne muscular dystrophy (DMD). Roseann remembers the difficult times experienced by her brother and entire family as Michael's muscle weakness grew progressively worse, leading to his reliance on a wheelchair for mobility, then to his need for constant medical care, and finally to his death from complications of DMD.
You might think that when Michael passed away, Roseann's relationship with MDA would have ended, or at least moved to a less-involved level. But you would be wrong. Instead, Roseann's relationship with MDA intensified with the discovery — more than 20 years ago — that her son, Joey, was affected by DMD. One of Roseann's sisters also gave birth to a son with DMD.
With new testing procedures developed through MDAsponsored research, Roseann and her sisters discovered that they all are carriers of the gene that causes DMD — in other words, DMD runs in their family. Roseann says, "All was not 'doom and gloom' during Michael's and Joey's lives. I recall several summers when Uncle Michael and Joey actually attended the same MDA summer camp together. MDA's summer camp was always the highlight of the year for them."
She remembers how they both looked forward to being with others with disabilities in a loving, caring and understanding environment; to having fun; and to getting away from all the difficulties of day-to-day life in a society that could be, at best, indifferent and at worst, cruel to people affected by neuromuscular diseases.
Roseann and her husband David, a retired, disabled Navy veteran who served two tours of duty in Vietnam, fondly remember the camaraderie and caring that they too experienced when they attended an MDA support group for parents of children with muscular dystrophies. They enjoyed being able to "be themselves" among knowing, caring, nonjudgmental peers who were living their lives as caregivers just as they were.
David and Roseann want you to know that they looked forward to attending MDA's support group because it gave them the strength they needed to learn about Joey's steadily deteriorating condition. They also want you to know that MDA was a constant, comforting companion that provided both help and hope to their family during the most difficult times.
In March of this year, at the age of 25, Joey passed away, just as his Uncle Michael had, from complications of DMD. With intense emotion and choking back tears, David and Roseann say, "We need MDA to find a cure. We need MDA to help stop the suffering."
David and Roseann continue to have hope. They want you to know that they're making a bequest to MDA so we can continue our efforts to find treatments or a cure for DMD and other neuromuscular diseases.
David and Roseann want you to consider making a bequest too! With more bequests, MDA will be able to fund more world-class research. With more research there is more hope, because we'll move closer and closer to the day when there are treatments and cures.
MDA's future is in your hands. Join David and Roseann as members of MDA's Legacy of Help and Hope Society soon.