At PPMD, I get to be part of a fraternity that none of us signed up for
I'm proud to be among people who continue to navigate life
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Each year, I attend at least one national gathering of people living with muscular dystrophy. In addition to learning about the most updated care standards, treatment strategies, and research initiatives, I’m able to bond with those who share a similar diagnosis, and have made some dear friends.
The upcoming Parent Project Muscular Dystrophy (PPMD) 2026 Annual Conference, which is held each year in June, continues to expand its outreach, and as a member of its Adult Advisory Committee (PAAC), I’ll be taking part in a session for teens and adults, where we’ll discuss topics such as mental wellness, adaptable video gaming, traveling with a wheelchair, dating and marriage, caregiver burnout, building a support system, and community building.
With the support of PPMD, the PAAC has grown into a brotherhood that extends far beyond just planning and hosting sessions. It also works year round to educate others about what adult life with muscular dystrophy looks and feels like. We amplify our voices in local, state, and federal advocacy to represent rare disease life in areas of funding, access, and quality healthcare, and each year, we travel to Washington, D.C., to talk about our needs. We also hold free online support groups, play fantasy sports, and share our life achievements.
One facet of our effort is to work with newly diagnosed family members who are entering this space for the first time, and to aid them in realizing that even the most severe type of muscular dystrophy is not cause to lose hope toward a brighter future. At our sessions at the conference, we share and teach people to embrace all available technology and durable medical gear as treatments. We do not want the next generation to feel anxiety and fear at seeing adults using power wheelchairs.
Giving and growing
The conference also hosts a research fair each year where industry and medical companies network with attendees and share news about clinical trials, developing therapies, and ongoing research.
A partnership between the PAAC and engineering students from Virginia Tech has helped to develop a low-cost robotic arm that can attach to a wheelchair and perform functions such as pushing hard-to-reach elevator buttons, gripping and moving objects, and even holding an umbrella in the rain. We plan to share our work at the resource fair and give people a chance to try it out.
A word about PAAC: What began with a handful of adults more than 10 years ago has grown to include more than 70 people from 39 states, and Canada. We are proud to have among our number published authors, people who’ve started businesses, college graduates, PhDs, those who’ve learned multiple languages, and even a gentleman who’s practicing law in Tennessee.
These are the stories of successful people who work hard and have learned to navigate life with a rare, chronic health condition, and who continue to defy the odds that have been stacked against them.
We are creating a world that is not only possible for the disabled, but are helping people with muscular dystrophy continue to increase their footprint on our Earth. I am honored to work with this group and value our shared bond of friendship that comes from belonging to a fraternity that none of us signed up for.
For anyone who is unable to travel to the conference, many sessions will be archived. For those living with Duchenne or Becker muscular dystrophy, PAAC members would love to talk with you about changing the world. If it feels right, please reach out to start a conversation. Nothing about us without us!
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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