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’s Annie Kennedy at annie@parentprojectmd.org.

Meet the 2019 PPMD Adult Advisory Committee

Porter Aydelotte

Age:
Dx: Duchenne
Hometown: Mission Viejo, CA

“Learning that I had Duchenne was a rather difficult period for me, but my family was a great support, and finding lifelong friends at school has helped make things easier for me. While my condition has worsened over the years, it still has not defeated me. I have excelled at my schooling since we have lived in California because of the great services that were advocated for me. I had the same aid from fifth grade until the day I graduated high school. He made a positive impact on my life through his assistance and willingness to help me. I received several awards due to my academic excellence, and from succeeding with a difficult situation.”

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.

Brett Felter

Age: 37
Dx: Becker
Hometown: Maryland

Brett was born and raised in northern New Jersey and was diagnosed with Becker muscular dystrophy at age 9.  Brett received his B.S. in Justice Studies from Arizona State University in 2003 and his J.D. from the University of Texas School of Law in 2007.  After graduating law school, Brett clerked for the Honorable Diane M. Johnsen on the Arizona Court of Appeals before moving to Baltimore to work as the inaugural Disability Rights Fellow at Brown, Goldstein & Levy, LLP.  He currently works as an Assistant Attorney General in the Maryland Office of the Attorney General, where he provides a wide variety of advice and litigation services for the Boards that regulate the health occupations and license health professionals in Maryland.  Brett previously served on the Board of Directors of the Maryland Disabilities Forum, and he currently sits on the Board of Directors of the American Civil Liberties Union of Maryland and serves as the Board’s Affirmative Action Officer. He lives in Baltimore City.

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.”

 

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.

Alex Lowe

Age: 22
Dx: Duchenne
Hometown: Plantation, Florida

Alex is a journalism major in his junior year at Broward College in Davie, Florida and is pursuing a life-long dream to become a sports journalist. Having been diagnosed with Duchenne at age 2 ½, he has been an integral part of the Duchenne community and attended PPMD’s Transitions Conferences and PAAC-led events in recent years, he is eager to serve as a leader within the PAAC and help guide policy for teens and adults within our community. Alex is a fantastic sports blogger.

Jonathan Piacentino

Age: 25
Dx: Duchenne
Hometown: Penfield, NY

Jonathan refuses to allow Duchenne to define who he is and has sought every opportunity to push boundaries and exceed expectations placed upon him. His achievements include acquiring the rank of Eagle Scout, graduating from Nazareth University with a degree in Biology and minors in Chemistry and Toxicology, and volunteering at both the Rochester Museum of Science Center and the Seneca Park Zoo. Jonathan drives a van, modified with joy stick controls. He also has actively participated in clinical trials, natural history studies, and investigational studies all aimed at supporting therapy development for Duchenne, and has met with Congressional representatives and regulators to advance PPMD ‘s Duchenne community initiatives. Jonathan is a tremendous advocate and contributor to the Duchenne community.

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.

Joshua Shaffer

Age: 23
Dx: Becker
Hometown: Bishopville, MD

“My name is Joshua Shaffer, I’m 23 years old, and I am living with Becker Muscular Dystrophy. I was born with it, but symptoms really did not show up until I was around 18 months old and diagnosed. Originally, I was diagnosed with Duchenne until about 2006 when Dr. Diana Escolar re-examined my biopsy to come to the conclusion that it was becker and not duchenne. I was able to do things most kids could until 2008 when I broke my leg. Muscle strength did deteriorate a bit since I was not able to do anything with my legs. Since then, my strength has decreased a little each year. While I am still walking, I have a waddling gait and have to be careful. My mom is the one who came across the the advisory council and thought it would be a good idea that I apply. I thought it was a good idea too, since it could connect me with others living with the disease, since there really aren’t any in our area. The contributions I feel I could make are connecting with those who have been newly diagnosed, as someone who has had the disease all his life, I know what it’s like to go through hard times. Anything I could do to mentor newly diagnosed patients is what I could bring to the table.”

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.

Josh Wagner

Age:
Dx: Becker
Hometown: Meriden, CT

Josh and his family have been active members of our PPMD community since he was first diagnosed with Duchenne at the age of one. Like many within our community, his diagnosis has waivered between Duchenne and Becker as diagnostic criteria and clinical symptoms progressed, but what never changed was his commitment to the community. Josh has participated in the Ataluren clinical trial since the age of 12 and in the fall of 2017 testified on behalf of the product’s approval during the Open Public Hearing at the FDA Advisory Committee.

Josh graduated with an accounting degree from Pace University in New York, NY and is currently pursuing his graduate degree in accounting at Southern Connecticut State University. In his application for the PAAC, Josh stated “I  want those affected by either DMD or BMD to be able to live their lives with more medical options and opportunities…  I feel that I can offer a unique perspective on Becker Muscular Dystrophy, and help advocate on behalf of Duchenne and Becker Muscular Dystrophy. “

Raymond Walter

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.”

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.”