Highlighting the lived experiences of MD patients at conferences

I have been involved with the annual Parent Project Muscular Dystrophy (PPMD) conference since 2002. Back then, the conference was attended by fewer than 50 people, almost no one living with muscular dystrophy (MD), and no representatives from pharmaceutical companies. The sessions were presented by scientists who did not speak in layman’s terms. As someone with limb-girdle MD, I felt overwhelmed and personally deflated by the lack of progress in disease research.

The more involved I got in the organization, the more I became an agent for change. I talked with parents and encouraged them to bring their children to the conference. I asked PPMD leadership to let me present my story.

I spoke about my social life, my career as a music teacher, my love of travel, and my amateur astronomy hobby. I shared about my support system and explained that asking for help was necessary to maintaining my quality of life.

Over time, the conference began to include more people living with MD and highlight how we can live our best possible lives. I am honored to have played a small role in that change, which has never been more apparent than at this year’s conference.

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In my last column, I described my work with PPMD’s Adult Advisory Committee (PAAC), a group of adults living with Duchenne and Becker muscular dystrophy. Our biggest forward-facing event is the annual conference, held last month in Orlando, Florida. There, more than 30 PAAC members led sessions as experts on life with MD.

Several years ago, we began by simply presenting topics to one another. Now, we have hundreds of people in our sessions, including adults living with MD. I believe this is because we focus on topics that resonate with the entire community, such as mental health, goals, finances, career options, travel, and relationships.

Our efforts have proven that adults with all types of MD should be central to all neuromuscular conferences. For many years, our community has watched parents, researchers, and healthcare staff meet to discuss the latest science, care guidelines, home modifications, medical visits, and accessible transportation while those of us with MD sit and listen.

We, the living experts, are changing this.

Our movement is growing through various organizations and platforms, including LinkedIn, Muscular Dystrophy News, PPMD, and the Muscular Dystrophy Association. Many programs now include community ambassadors, and groups like PAAC develop, plan, and lead conference sessions, host webinars and livestreams, and connect with one another to keep our expert voices at the forefront.

We speak directly to biopharmaceutical companies developing drugs and tell them not to forget the older MD population when developing clinical trials. We strengthen the global MD network by speaking with our friends at the World Duchenne Organization, PPMD Italy, Pathfinders Neuromuscular Alliance in the U.K., and emerging adult patient networks in countries such as Mexico and Brazil.

We, the patients, blog, record podcasts, and film Reels and videos. We stream on YouTube, TikTok, and Twitch to educate others about adult life with MD. We continue to enroll in natural history studies and keep personal journals documenting our health and well-being.

We add to the scientific record by sharing data points on our disease progression, and speak with families of newly diagnosed young people about transitioning into adulthood with MD. We remind them that the sky is not falling as long as we work together to support one another.

The best part, for me, is building friendships with people I never would have met if I didn’t have MD. This is the best family that none of us asked for. Forging lifelong bonds with a community that understands is a rich reward. I work hard to ensure everyone I meet feels the same way.

I am always recharged and refreshed after the annual PPMD conference, but this year was different. It felt like a tidal wave of change. Adults with MD are in demand as public speakers and consultants to pharmaceutical companies, and our words carry weight. People are realizing that patients should take the reins in moving the field forward.

And we are just getting started. If you are an adult living with MD, please join the Muscular Dystrophy News Forums, say hello, and share your expert knowledge. All positive change begins with one interaction, one introduction, and one comment.

Let’s do this together.

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.