Meet our 2015 PPMD Adult Advisory Council!

“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:

Pratik Awasthi
24 years old; Canada
Becker muscular dystrophy

Masters in Engineering in Software Engineering, University Western Ontario

Christopher (Buddy) Cassidy
25 years old; Annandale, VA
Duchenne muscular dystrophy

MFA, American University; University of Richmond and Oxford, undergrad

Alan Chaulet
24 years old; Massachusetts
Duchenne muscular dystrophy

Degree in Management from Bentley University

Pacien Cunningham
34 years old; Los Angeles, CA
Duchenne muscular dystrophy

Professional sports announcer, Degree in Communications; Has been living independently for 11 years

Benjamin Cumbo IV

27 years old; Upper Marlboro, MD
Duchenne muscular dystrophy

Masters Candidate in International Affairs, GWU

Mario Damiani
37 years old; Silver Spring, MD
Becker muscular dystrophy

Attorney with the United States Architectural and Transportation Barriers Compliance Board, Office of the General Counsel

Anthony DeVergillo
21 years old; Bedminster, NJ 
Duchenne muscular dystrophy

Senior, Rutgers University, majoring in Communications, minoring in Digital Communication, Information & Media

James Hood
42 years old; Baltimore, MD
Duchenne muscular dystrophy

Blogger, video designer

Paul Marcum
47 years old; Ostrander, OH 
Duchenne muscular dystrophy

Homeowner for 13 years, serves on Board of State Housing Agency & DD Commission

Matt Petrusko
33 years old; Rahway, NJ
Duchenne muscular dystrophy

Master’s Degree in Political Science from Kean University

Kanch Randhawa
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

Colin Rensch
20 years old; Kalamazoo, MI
Duchenne muscular dystrophy

Junior at Hope College in Holland, MI double majoring in music and history

Michael Stone 
64 years old; Boynton Beach, FL
Becker muscular dystrophy 

Was a floor trader; has extensive volunteer & fundraising experience; also has grandson with Duchenne

Evan Stutman
29 years old; Aurora, CO
Duchenne muscular dystrophy

Completing Master of Social Work at Metropolitan State University of Denver

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