Parent Project Muscular Dystrophy offers me chance to give back

Throughout my life, I have been asked the following question numerous times: What motivates you to get up and do what you do every single day? For me, the answer to that question came from what some might call an unexpected place: A quote from the movie “Robots”: “See a need, fill a need.”

Hi, my name is Adith Thummalapalli, and I am a 28-year-old with Duchenne muscular dystrophy. Like anyone living with any disability or chronic, debilitating condition, our community has no shortage of needs. 

Healthcare. Treatments. A cure. Access to durable medical equipment. Physical and mental support. Caregivers. Social rights. Equality. Financial support. Government services. And above all, a need for community and social connections.

For peers.

For friends.

For a family none of us chose to be part of.

Those of us with dystrophinopathies (Duchenne, Becker, and female carriers with manifesting symptoms) live with these needs day in and day out. Who better to meet the needs than the people who have them? 

Enter Parent Project Muscular Dystrophy’s Adult Advisory Committee (PAAC), a group of adults from across the U.S. and beyond, living with dystrophinopathies. It started in 2015 with 14 members and has since grown to 74. 

Pictured above is a group photo of the PAAC at PPMD’s annual conference in Orlando. (Courtesy of Adith Thummalapalli)

I joined the PAAC in 2021, spent two years as a member, three years as vice president, and currently serve as president. But this column isn’t about me; it’s about the work the PAAC does. Our mission statement is as follows:

“The PAAC takes a holistic approach to advocacy, addressing: care, community, and quality of life. We work together to elevate the lives of individuals living with Duchenne and Becker through mentorship, outreach and education. We support the teen and adult voices of Duchenne and Becker as an extension of PPMD. “

Here is what that boils down to: Using our voices to advocate and share our experiences living with Duchenne and Becker, to address the community’s needs in whatever ways the community needs. We serve the community the way they want to be served.

Thummalapalli prepares for a day of advocacy and meeting with congresspeople and staffers on Capitol Hill as part of PPMD’s annual advocacy conference. Not pictured are the more than 200 other advocates at the conference. (Courtesy of Adith Thummalapalli)

I know the power your individual voice can have in driving change, and the PAAC helps people find that voice within themselves and put it to good use. Even those who rely on technology and machines to speak for them can have powerful voices. Beyond that, the PAAC showed me the power of the collective voice. So how does the PAAC put that collective voice into action? Read on.

Here are some highlights of our current work:

• Serving as patient advisers on clinical trial advisory boards for a multitude of pharmaceutical companies as they develop new therapeutics 
• Advocating yearly on Capitol Hill for increased government funding toward DMD and BMD research
• Serving as consumer reviewers for the Congressionally Directed Medical Research Program to allocate those government research funds 
• Sharing our work with the greater community via our quarterly newsletter 
• Collaborating with engineering students at Virginia Tech to develop a low-cost robotic arm and other assistive technology
• Developing programming, speaking on panels and leading sessions at PPMD’s annual conference, PPMD Together regional events, and monthly PAAC livestreams about topics of interest to the community. Topics include navigating school and college, working, travel, relationships, government benefits, DIY life hacks, mental health, managing caregivers, future life planning, and more. 
• Expanding initiatives and support for those with Becker
• Curating a repository of useful websites, life hacks, resources, and one-page tip sheets that make our lives easier
• Developing a strong social media presence and creating content about our daily lives with DMD and BMD
• Hosting periodic virtual socials and activities like book club, bad movie club, writing club, and fantasy sports leagues

PAAC members lead and speak at informational sessions during PPMD’s annual conference. (Courtesy of Adith Thummalapalli)

The PAAC is doing some incredible work, but we have more plans for the future:

• Collaborating with more organizations in the international muscular dystrophy space
• Advocating at all levels of government to push for policies and laws that can benefit people with all disabilities, not just Duchenne and Becker 
• Advising PPMD’s Duchenne Care Center (CDCC) program to ensure medical centers and providers can provide optimal care for those with dystrophinopathies
• Working with DME providers and insurance to make it easier to access and pay for equipment
• Creating guidelines for accessible apartments and hotel rooms 
• Expanding initiatives and support for women with dystrophinopathy
• Providing more support for others in the community (parents, siblings, grandparents, family friends, allies, etc.) and reminding them that they are not alone in this fight

“See a need, fill a need.”

That’s why I do what I do every day. It’s one of my life purposes, and I am blessed to have found it so early in life, while many others struggle to find theirs. It is an honor to lead a group like the PAAC. 

This article was provided by our partner, Parent Project Muscular Dystrophy. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Muscular Dystrophy News.