PPMD Adult Advisory Committee (PAAC)

The PPMD Adult Advisory Committee (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 Committee members kick-off the year by participating in PPMD’s Advocacy Conference — and then help to plan the Teens & Adults Track for PPMD’s Annual Conference each June.

Interested in joining the PAAC?

Each fall, we seek new applicants for openings on the PAAC in the coming year. We strive for diversity as we compose the PAAC and encourage any member of our community with an interest in being a part of this leadership group to considering applying. For more information about joining the PAAC, contact PPMD.

Meet the 2020 PPMD Adult Advisory Committee

Spencer Atkinson

Age:
Dx: Duchenne
Hometown: Fredericksburg, VA

I have had experience in leadership in high school marching band staff, with a Campus Ministry in college for a few years and at my job as a manager for the past three years. My desire is to be on this board to make a difference for others with Muscular Dystrophy and their families. My greatest hope is to see people with Muscular Dystrophy and other disabilities thrive; living life to the fullest.”

Jenn Bauer

Age: 40
Dx: Manifesting Carrier, Duchenne
Hometown: New Jersey

After the death of her brother and former PAAC member Matt Petrusko, Jenn joined the PAAC in 2016 to help continue Matt’s extraordinary legacy. A devoted mom and wife with a background in business and elementary education, Jenn’s passion and expertise have been a strong complement to the team. In addition, as a manifesting carrier with significant muscle weakness, she has been able to help represent the priorities of female members of our Duchenne/Becker community. Jenn is very grateful that PPMD has made the health of DMD/BMD carriers an important initiative. After three years on the PAAC, Jenn is glad to have the opportunity to continue to make connections with all the wonderful people she has met along the way.

Buddy Cassidy

Age: 29
Dx: Duchenne
Hometown: Annandale, Virginia – currently living in Irvine, California

Buddy has been involved in advocating for and bringing public awareness to the challenges and successes of those with physical disabilities, particularly neuromuscular diseases, since he was a little boy. His advocacy efforts formalized as a student attending the University of Richmond when he would regularly meet with administrators on how to improve the accessibility of the campus for those with impaired mobility. His educational pursuits led him to a study abroad program at Oxford University and then back to the U.S. where he received an MFA from American University. Buddy previously worked as a docent at the Folger Shakespeare Library in Washington, D.C. and currently is attending the University of California Irvine where he is completing a PhD program in English literature.

As a member of the PPMD Adult Advisory Council, Buddy has testified at congressional briefings, helped to shape policy, and has served as a mentor to others within our community. In 2015, his work with the PAAC brought him in contact with the FDA where he learned of the FDA’s Patient Representative Program. Buddy now serves as a special government employee to the FDA, representing the Duchenne community.

Alan Chaulet

Age: 29
Dx: Duchenne
Hometown: Massachusetts

Alan Chaulet was born an entrepreneur and political advocate. With a degree in Management from Bentley University, Alan immediately launched his first business called ‘Badass Ability’. Over the last 2 years, Alan has been making a federal policy impact as co-founder of All Wheels Up, an organization working with federal aviation officials and engineering professionals to enable passengers remain in their wheelchairs during air travel. Alan also works as the adult community advisor to PPMD’s DuchenneConnect. He is incredibly passionate about improving the drug development process and ensuring healthcare access for all with Duchenne and Becker.

Michael Counterman

Age: 26
DX: Duchenne
Hometown: Canton, MA

Michael is currently a student at the University of Massachusetts Boston, studying communications and sports broadcasting. Diagnosed with Duchenne at age 3, Michael has been dedicated to serving others. His community engagements have included work as a peer leader at Partners Youth with Disabilities, and working as a counselor for the Easter Seals Camp for children with Autism. In addition to attending college, Michael works with Solid Biosciences in Cambridge, Massachusetts.

Sean Crosby

Age: 23
Dx: Duchenne
Hometown: Fort Mill, SC

Sean Crosby is an avid sports enthusiast and is often found announcing local sporting events and sports announcing. In addition to announcing for the Victory Sports Conquer League, he recently established his voiceover business, recorded a demo tape, and established a website. Go Sean!

Anyone who knows Sean knows that the sport he is most passionate about is football (and he’s a diehard Panthers fan). Sean also enjoys playing chess and Xbox, listening to music, watching movies, meeting new people, and memorizing various stats and facts.

Sean is also very committed to contributing to his community and spends three days a week volunteering with adults with cognitive disabilities leading activities, small groups, and serving as a mentor at the Adult Enrichment Center. He also serves as an assistant chess coach for a local elementary school. Sean is employed with ABLE South Carolina and serves on their adult advisory council.

Ben Dupree

Age: 26
Dx: Duchenne
Hometown: Dallas, Texas

Ben is a valued member of the PPMD community whose passion for Duchenne advocacy started at an early age as he met with members of Congress while in middle and high school and advocated for the passage of the MD-CARE Act. In 2015, 2016, & 2017, Ben served as a panelist and organizer of PPMD’s Transition meeting in conjunction with the Annual PPMD Connect Conference and was a passionate advocate during the EndDuchenne Hill Rally that June. Ben joined the PAAC in 2016 and has been making a significant impact.

Ben’s work with the PAAC brought him in contact with the FDA where he learned of the FDA’s Patient Representative Program. Ben now serves as a special government employee to the FDA, representing the Duchenne community. Ben also works with PPMD’s PCORnet program and is helping to lead a Mental Health Initiative within our Duchenne Community, in connection with DuchenneConnect and the PAAC. PPMD recently nominated Ben to serve as a peer-reviewer to the Department of Defense Congressionally Directed Medical Research Program for Duchenne.

Ben has a degree in Biochemistry from Southern Methodist University and is pursuing a graduate degree in Social Work. He has also been involved in early exploration of the CRISPR Cas-9 study and it’s application to Duchenne.

Michael Gaglianone

Age: 23
Dx: Duchenne
Home state: Mount Ephraim, NJ

“I want to be a PAAC member, because I bring a lot of experience to the table. I have participated in many panels at the PPMD annual conference and have also attended many advocacy conferences. Additionally, I have spoken to Congress to help pass The M.D. Care act. I think my experiences will be an asset to the PAAC.”

Jacob Hill

Age: 20
Dx: Duchenne
Hometown: Marietta, OH

“I choose not to let DMD get in the way of my goals no matter what.”

 

Riley Jonatschick

Age: 19
Dx: Duchenne
Hometown: Pitt Meadows, Canada

Riley is a graduate of the Access Program for People with Disabilities at Kwantlen University, which provided employment training. He also has volunteer experience with Muscular Dystrophy Canada and in 4th and 5th grade classrooms at his former elementary school. Riley currently works as an assistant for a pool-based physiotherapy program with children and youth with disabilities. This job has provided Riley the opportunity to work with several boys who’ve recently been diagnosed with Duchenne.

DJ Kimble

Age: 40
Dx: Duchenne
Hometown: Upper Tract, WV

The reason I believe I could help by being a part of the Adult Advisory Council is because I have my forty years of experience living with Duchenne, that I believe could be helpful to the younger generation of those of us with Duchenne. I believe I would most likely be interested with helping with everyday life and even the political aspects of life for those with disabilities, especially the Muscular Dystrophy area because I’m really a political junkie. “

Austin Leclaire

Age: 20
Dx: Duchenne
Hometown: Arlington, Massachsutts

Austin has been an active member of the Duchenne and PPMD community for much of his life – but has become a dedicated advocate within the last 5 years. Austin is passionate about clinical trial access and has had extensive personal experience with clinical trial participation and overcoming barriers to therapies. He enjoys public speaking and has testified both before the FDA and within Congressional Briefings on behalf of our Duchenne community.

Austin is eager to join the PAAC to be able to serve as a mentor to others with Duchenne and their families – and to help to shape the policy priorities of our community. Austin possesses great skills in computer technology and 3D printing and has conducted numerous internships and projects in this technical skill area; he is currently a freshman at Massasolt College pursuing a degree in Mechanical Engineering.

Ravi Lipman

Age: 20
Dx: Duchenne
Hometown: Collierville, Tennessee

Ravi is currently obtaining his BS in Political Science and Biology,  at the University of Memphis, TN, expected May 2021. His interest is in genetics & currently, and he is currently doing research in a lab at Univ of Memphis. Ravi has interned at The Ecological Society of America, where he learned about the importance of advocacy that affects policy development in government and in the community. Ravi is also part of a student organization on campus called Up til’ Dawn, whose mission is to fundraise for St. Jude Children’s Research Hospital, spread awareness of childhood cancer, and highlight the important research that happens at St. Jude in an effort to eradicate cancer for good.

Dylan Miceli – Nelson

Age: 18
Dx: Duchenne
Hometown: California

Dylan has been actively engaged in advocacy and research for most of his life, having participated in clinical trials and natural history studies, PPMD roundtables and presentations, an FDA advisory committee meeting and was featured in a People magazine. Several years ago when he was thirteen Dylan launched a social media campaign to raise awareness for DMD. He contacted social media influencers Smosh and Dude Perfect and asking if he could shoot a video with them so people with disabilities are better represented. These two videos have now gotten over 30 million views and remain very popular. Due to this, Dylan been able to grow his instagram and youtube viewership where he has focused on presented his perspective as a disabled person living in an ableist world.

Patrik Nabelek, PhD

Age:
Dx: Duchenne
Hometown: Corvallis, OR

Patrick has a PhD in applied mathematics from the University of Arizona. He is employed by Oregon State University as a mathematics instructor, while also continuing as a researcher in Mathematics. Patrick’s primary research interest in mathematics is on the theoretical analysis of water waves, including special waves known as solitons.

Alex Peeler

Age:
Dx: Duchenne
Hometown: Nova Scotia

Alex is a Freelance Filmmaker and owner of Squeaky Wheel Productions (a media company with a focus on advocacy). He is a graduate of the Screen Arts & Business Administration programs, Nova Scotia Community College. For the past four years, Alex has been continually advocating for improved accessibility on behalf people with all types of disabilities. In November 2015, he started a petition to the Government of Canada urging them to implement a national assistance program for Canadians with disabilities. The following year, in November 2016, he attended a National Youth Disability Forum in Ottawa to advise the federal government on the development of the recently enacted Accessible Canada Act (ACA). In addition, Alex is currently involved in a number of boards and committees that represent the disabled community: He is a member of the Halifax chapter of Muscular Dystrophy Canada (MDC) and he sits on their Volunteer Engagement Advisory Committee (VEAC), he is the chair of the Nova Scotia League for Equal Opportunities (NSLEO) and he represents the League on the Council of Canadians with Disabilities (CCD), and he is a member of the Nova Scotia Accessibility Advisory Board (AAB), which advises the provincial government regarding the implementation of the Nova Scotia Accessibility Act. Alex also produces a YouTube series to educate people about disabilities and accessibility, and he executive produced a short documentary about accessibility in his hometown, which screened in the 2019 FIN Atlantic International Film Festival.

Colin Rensch

Age: 25
Dx: Duchenne
Hometown: Kalamazoo, MI

Colin has an extensive background in advocacy and service, having contributed extensively to his college, church, and local communities for many years. An Andrew W. Mellon scholar at Hope College, Colin graduated with degrees in both music and history and numerous noteworthy accomplishments as a musician throughout his college career. As a member of PPMD’s Adult Advisory Committee, Colin has helped to shape federal policy, co-led PPMD’s national transitions conference, and participated in federal advocacy efforts on Capitol Hill. When asked about his experiences with the PAAC over the last year he reflected, “we all come to the table having experienced life with Duchenne or Becker, and it is awesome to be able to work together to tackle this disease”.

Colin spent several months in 2017 pursuing his passion and expertise for music in Vienna, Austria.

Alex Toalson

Age: 22
Dx: Duchenne
Hometown: Lincoln, Nebraska

Alex is a recent graduate from the University of Nebraska Lincoln with a degree in biological sciences and is now pursuing a graduate degree in biomedical research to find treatments for diseases such as Duchenne muscular dystrophy.

Alex is particularly passionate about utilizing assistive technology to overcome physical barriers. He has personally used assistive technology in such a way that has allowed him to be successful despite requiring a wheelchair full time for mobility and having limited use of his hands. With this experience, he would like to help other adults living with Duchenne muscular dystrophy.

Michael Voto

Age: 60
Dx: Becker
Hometown: Staten Island, NY

Michael was formerly a field service technician for 31 years, loves to travel and garden, and has extensive volunteer experience (Alzheimer’s Foundation of Staten Island, Community Agency for Senior Citizens, the Visiting Nurse Association of Staten Island, the Staten Island interagency for senior citizens, MDA, Parent Project Muscular Dystrophy, Michael’s Cause, Kindness over Muscular Dystrophy, and many others aiding MD).

Raymond Walter, PhD

Age: 24
Dx: Duchenne
Hometown: Fayetteville, AR

At only 24 years old, Raymond Walter is a doctoral candidate in mathematics and physics at the University of Arkansas. He has ten published papers and has held highly competitive research fellowships from the National Science Foundation and the U.S. Department of Energy. Raymond’s inspirational story of graduating with a triple major from the university at age eighteen, despite his Duchenne Muscular Dystrophy diagnosis, has been shared in many venues, including the U of A’s Short Takes video series, the Arkansas Democrat-Gazette, and the Muscular Dystrophy Association’s Strongly blog. His advocacy for agricultural education to young audiences was recognized with Honorary State and American degrees from the Arkansas FFA Association and the National FFA Organization. He has advocated for self-advocacy and autonomy of disabled individuals through TEDxFayetteville and disability awareness events. Raymond helps manage his family’s ranch in the Ozarks, where he lives with his family and their many farm dogs.”

“As a PAAC member, I would contribute four things. First, my professional experience in STEM grants me the scientific literacy to engage directly with muscular dystrophy researchers and their work as a fellow scientist. Second, my education in economics and business helps me to evaluate the impacts of public policy for those with muscular dystrophy and other disabilities. Third, my experience in educational and disability outreach and in the media would help me to advise on PPMD’s outreach efforts and later on to engage in these outreach activities myself. Fourth, I would use my committee position to encourage others with muscular dystrophies (not only those with DMD like me) to push for accomplishments commensurate with or exceeding my own.”

Adam Wechsler

Age: 23
Dx: Duchenne
Hometown: Jericho, VT

Adam graduated from the University of Vermont in 2018 with a B.S. in Environmental Studies, and  is passionate about working in the environmental field, specifically on green building, planning, and universal design. He is currently serving as a full-time AmeriCorps member at ReSOURCE in Vermont, helping to divert waste from the landfill and supporting students in training programs with barriers to employment. In his free time, Adam enjoys spending time with friends, attending concerts, playing video games, watching TV and movies, and reading. He also volunteers on the Jericho Energy Task Force in my community.

Colin Werth

Age: 23
Dx: Duchenne
Hometown: Farmville, Virginia

Colin graduated from community college in May of 2015 and works as an IT Specialist for Letterpress Communications. He also dedicates time volunteering as an assistant superintendent for a local model railroad club.

Colin joined the PAAC in 2016 after having been involved with PPMD since he was first diagnosed with Duchenne in 1998. While his family has been involved in all levels of the community and organization, being a part of the PAAC allowed Colin to advocate as an adult within our community. He has spoken at Every Single One tour venues, participated in PAAC-led meetings, advocate on Capitol Hill, and now is working with an industry partner to integrate the perspective of the adult community in their drug develop and access program considerations.

Jake Wesley

Age: 18
Dx: Duchenne
Hometown: Trevose, PA

I am eager to join the PPMD Adult Advisory Committee because i enjoy helping people and would love to be a mentor and Advocate for others with duchenne and also their families. I have testified in front of the FDA Access to drugs to treat duchenne, as well as being to many offices of Congress to get approvals. I enjoyed getting up in front of people and talking about my community and about Duchenne. I have been An active member of the Duchenne and PPMD Community for most of my life. I am passionate about people getting access to drugs they need through clinical trials and approval. I hope to help shape the medical policies needed for our Duchenne families and patients.”

Chris Younkin

Age: 20
Dx: Duchenne
Hometown: Virginia Beach, VA

“I’m writing to PPMD today with the hope of joining the 2019 PPMD Adult Advisory Committee.  As shown in the included resume and recommendation letter I have shown exemplary leadership skills.  Being an adult role model with Muscular Dystrophy would be a great opportunity for me.”