“We were the generation that was hoped for… And now we’re here.” L. Vance Taylor
The PPMD Adult Advisory Council (PAAC) serves to ensure that the voices of adults living with Duchenne and 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. To that end, when we “cast our net” and put out the call for applicants, we hoped to attract a diverse and accomplished candidate pool. We were absolutely blown away by the response rate. Those who applied included men from around the world whose professional and academic interests included law, policy, engineering, computer science, graphic design, blogging, digital arts, social services, advocacy, and much more.
This year, PAAC members will lead PPMD-initiatives that specifically address topics of interest to teens and adults living with Duchenne and Becker: driving, independent living, home modifications, life after college, dating and family life, managing personal care attendants, robotics as mobility options, navigating the system, mentoring, clinical trial design and inclusion, and more. PAAC members may also serve on committees led by federal agencies and pharmaceutical industry partners. The 2015 PPMD Adult Advisory Council members will kick-off their year in February by participating in PPMD’s Advocacy Conference.
And to all of the other teen and adult members of our Duchenne/Becker community – heads up! The PAAC will be looking for many more great leaders to get involved and a variety of ways over the coming weeks and months as we work to ensure that we transform this moment into a movement.
So, drum roll please… Meet our 2015 PPMD Adult Advisory Council:
39 years old; Toronto, Canada
Becker muscular dystrophy
Council experience includes Bank of Montreal Diversity Council, Centre for Independent Living Toronto, Access – York University, Able – York; Married, 3 children