I can’t believe it’s almost the beginning of a new year. In about a week, I will lace up my sneakers once again and join my chosen family for another Walt Disney World Marathon Weekend. I’ve been involved with PPMD for a long time and have become increasingly grateful for the power of this community. Your support and generosity never cease to amaze me. I feel the Power of Us with every step I take.
My son Nick was diagnosed in 2001, the same year the MD-CARE Act was passed. Nick is now in his 20’s and lives independently with assistance from caregivers. He recently graduated from college and has a supportive network of friends. I truly believe that his quality of life is directly correlated with the passage of the MD-CARE Act and the subsequent funding and support from the federal government that followed.
He was part of the first generation of boys with Duchenne or Becker to be treated proactively, to have a standard of care to follow and to have the opportunity to participate in groundbreaking clinical trials.
The Wellstone Muscular Dystrophy Cooperative Research Centers and the research completed as a result of their creation is the reason my family has more agency—more actions to take and options to weigh—because options now exist.
For twenty years, these specialized centers throughout the United States have led the field not only in research, but also in the training and development of researchers leading the fight to end Duchenne. The research conducted at these centers has led to the potential therapies we see in clinics today and those approved to date.
Since my son’s diagnosis, I have seen innovation in research become a reality. I have seen the Power of Us change the lives of these boys. I have seen more purpose given to their years and move living in their lives. They are active longer, their lungs are stronger longer and their lives are richer.
With a gift to support PPMD’s commitment to expand and enhance the power of the Wellstone centers, you are making a direct investment in the future of Duchenne and Becker research for Nick and so many others like him.
Duchenne Parent, PPMD Board Member, PPMD Connect Coordinator