For Adults / Young Adults
“We are the population that was hoped for — and now we’re here.” L. Vance Taylor
This statement made by an adult with muscular dystrophy perfectly captures the spirit of PPMD’s Teen and Adult Programs. Together — our teens, young adults, parents, and community members — are working to ensure that people with Duchenne don’t just SURVIVE into adulthood with greater frequency than ever before — but that they also THRIVE in adulthood.
Our policy initiatives and programs are driven by teens & adults within our community. Together, we are working toward policy changes and resource pathways that must be created and improved for our new generation of men and women to achieve their fullest potential. Please consider joining us.
Facebook Group: Duchenne/Becker Teen and Adult Community
PPMD’s Adult Advisory Committee, better known as the PAAC, has launched a Facebook group that gives people with Duchenne and Becker (and their loved ones) a safe place to discuss topics that are important to daily life. This group serves as a way to share resources and to address questions and concerns. Being a teen or adult with Duchenne or Becker brings unique challenges and opportunities and this is a platform to come together, knowing that you are not alone. Additionally, the PAAC shares their perspectives on a variety of topics and routinely post educational materials.Join the Facebook Group
Meet the PPMD Adult Advisory Committee (PAAC)
The PPMD Adult Advisory Council (PAAC) serves to ensure that the voices of adults living with Duchenne & Becker Muscular Dystrophy are reflected in PPMD’s legislative, policy, and program activities. PAAC members serve in a formal advisory capacity for their respective term and maintain leadership over a PAAC initiative throughout that term; PAAC initiatives are determined by the PAAC membership and PPMD Executive Team. It is our intention that this leadership group will help PPMD continue to accelerate policy momentum and will begin to revolutionize the way that our emerging adult community is conceptualized.
The PPMD Adult Advisory Council members kick-off the year by participating in PPMD’s Advocacy Conference — and then help to plan the PPMD Transitions Conference which we convene in conjunction with PPMD’s Annual Conference each June.
Applications open each fall to apply for PAAC membership the following year. If you are interested in learning more and becoming a 2022 PAAC member, please contact us.Meet the PAAC
Connect with the Teen & Adult Community
You do not have to be a PAAC member to be an active participant in the teen and adult Duchenne community. The PAAC hosts regular virtual socials, leads advocacy efforts, and simply wants to connect with the Duchenne and Becker teen and adult community. Complete the below survey to be contacted by a PAAC member as well as be notified about opportunities to get involved.Get Connected
Become an Advocate
For teens adults within our community, engagement within PPMD’s advocacy efforts is especially critical in order to ensure that the policy’s that impact you most – reflect YOUR voice. Benefit eligibility, independent living options, health care and personal care attendant funding resources, educational access, employment – a small sampling of the policy issues of importance to PPMD’s teen and adult community that require your powerful and active influence.Join the PPMD Advocate network
Plan for Transition of Care Through Adulthood
Successfully navigating the transition from childhood to adolescence and adult life requires careful and ongoing planning and support. While individuals with Duchenne should be included in their health care and future planning beginning at an early age, focused transition planning should begin around the age of 13 or 14, as developmentally appropriate. This planning should be centered around the goals of the individual with Duchenne and include a comprehensive team of community providers including educators, social workers, health care team members, and family. Topics that should be addressed within the transition plan should include transitions in health and health care, goals for education and employment, access to the community (navigating public transportation or driving), facilitating an active social life and relationships, and supporting housing goals.Learn about Transition Planning
Explore our Community Resource Center
The PPMD Community Resource Center is meant to be a one-stop online resource for every child, adult, and family living with Duchenne. Here you can find some of the favorite resources, products, and organizations of our community members. As a community resource and online tool, we need you to contribute your experiences and tell your stories to this secure social network of families around the world fighting to end Duchenne.Visit PPMD’s Community Resource Center
Attend the Annual Transitions Meeting
PPMD’s Annual Conference includes a meeting track dedicated exclusively to adults with Duchenne and Becker. Presenters specifically address topics of interest to teens and adults, such as: driving, independent living, home modifications, life after college, dating and family life, adaptive technology, managing personal care attendants, robotics as mobility options, navigating ‘the system’, and more. This meeting also has a strong tone of self-advocacy and empowerment as we work to ensure that we transform this ‘moment into a movement’.Learn about PPMD’s Annual Conference & Transitions Meeting
Explore PPMD’s Robotics Initiative
The loss of ability to perform simple tasks that many people take for granted is one of the toughest aspects of Duchenne. The loss of independence. The need to prevent these losses led to PPMD’s Robotics Initiative. We’re excited because the technology we are supporting and the proposals we are reviewing with this initiative, span the needs of the entire Duchenne population. We believe robotic technology will spare muscle deterioration keeping people with Duchenne stronger for longer. Our Robotic Initiative explores devices that have the potential to assist everyone living with Duchenne.Learn about PPMD’s Robotics Initiative