PPMD Adult Advisory Committee (PAAC)
The PPMD Adult Advisory Committee (PAAC) is on a mission to elevate the lives of individuals living with Duchenne and Becker muscular dystrophy through advocacy, education, mentorship, and awareness. We represent the teen and adult voice of people living with Duchenne and Becker as an extension of Parent Project Muscular Dystrophy (PPMD).
PAAC 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. Despite the inability to travel to PPMD conferences this year, the PAAC has been working hard to connect the community virtually and continue to work towards their ultimate goal of elevating the lives of individuals living with Duchenne and Becker.
How to Get Involved
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 email Pat Moeschen.
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.
Please join the PAAC’s Facebook Group, or complete the below survey to be contacted by a PAAC member, as well as be notified about opportunities to get involved.Get Involved with the Teen & Adult Community >
Meet the 2021 PPMD Adult Advisory Committee
Hometown: Chisago, MN
Education: BA Geography; currently first year grad student in geographic information science (GIS) at the University of Minnesota Twin Cities
Cole joined the PAAC in 2021 and is enthusiastic about developing mental health and relationship resources for men with MD. He is a graduate research assistant at the Institute for Social Research and Data Innovation at the University of Minnesota Twin Cities. In his free time, he enjoys collecting LEGO models, going out with friends (when it is again safe to do so), cooking new recipes, and engaging in Star Wars fan forums.
My name is Spencer Atkinson. This is my second year on the PAAC. I live in Fredericksburg Virginia. I started attending school at the University of Mary Washington in 2010. While attending school there I served as a student leader at The Center for Faith and Leadership for two years. In 2014 I graduated with a bachelor’s degree in Psychology. Later that year I began working at the ID Card Center on the Quantico Marine Corps Base. I now work at the same office as a passport agent and assistant supervisor. I'm a music enthusiast. I have always enjoyed playing music. I used to play the alto saxophone, marimba, and the ukulele. I have recently been getting into digital music making. In my spare time, I also enjoy finding nature trails to go on, watching football, and traveling to new places.
Areas of Expertise: Music, hiking, watching football, mentoring younger DMD clients, travel
Hometown: Lexington, MA
Education: Management degree, Bentley University
Alan is a passionate entrepreneur and political advocate who currently works as the adult community advisor for PPMD’s Duchenne Registry. In 2014 Alan joined “All Wheels Up.” In his role, Alan: helped All Wheels Up pass an amendment in 2018 requiring a Department of Transportation Study into wheelchair securement systems, worked with Airplane Manufacturers, Airlines, FAA, and DOT in creating a standard to ensure passengers remain in their wheelchairs during air travel, and has given talks globally.
Areas of Expertise: Entrepreneurship, advocacy around drug development process and healthcare access
Hobbies: TV, movies, video games, and sports
Hometown: Fort Mill, SC
Sean is an avid chess player and sports enthusiast--a diehard Panthers football fan--and can often be found announcing local sporting events. He also has experience in voiceover and virtual assistant work. He is currently employed as an independent contracting chess teacher for Chess Klub in Fort Mill and volunteers as a chess coach for a local elementary school. Sean is also very committed to contributing to his community and spends three days a week volunteering with adults with cognitive disabilities where he leads activities, facilitates small groups, and serves as a mentor at the Adult Enrichment Center.
Hobbies: Xbox, music, movies, socializing
Hometown: Dallas, TX
Education: Biochemistry from Southern Methodist University, currently pursuing a graduate degree in Social Work at University of Texas at Arlington
Ben is a valued member of the PPMD community whose passion for Duchenne advocacy began as a teen meeting with members of congress to advocate for the passage of the MD-CARE Act. From 2015-2017 Ben served as panelist and organizer of PPMD’s Transition meeting at the Annual PPMD Connect Conference as well as participating in the YEAR EndDuchenne Hill Rally. Ben has been a PPMD PAAC member since 2016 where he became involved with the FDA’s Patient Representative Program, serving as a special government employee to the FDA to represent the Duchenne community. He has also worked with PPMD’s PCORnet program and helped to lead a Mental Health Initiative within our Duchenne Community. In late 2018 PPMD nominated Ben to serve as a peer-reviewer to the Department of Defense Congressionally Directed Medical Research Program for Duchenne. Ben served with this program until early 2019. He has also been involved in exploration of the CRISPR Cas-9 study and its application to Duchenne.
Hobbies: Improv comedy, board games, trying new foods, road trips
Hometown: Mount Ephraim, NJ
Education: Audubon High School
Michael is a dynamic Duchenne advocate (and former prom king!) from New Jersey. He achieved high academic honors during all four years of high school and was awarded Senior athletic awards in baseball, football, and wrestling. Michael was also recognized by the NJ State Legislature as the most courageous student and awarded the unsung hero award (2014) by the South Jersey Baseball Coaches Association. Michael is an avid traveler having visited Canada, Italy, Venezuela, Puerto Rico, and several Caribbean Islands along with closing in on his goal of visiting all 50 states (34 and counting). Michael is working on creating a podcast titled Rolling with MJ. He remains passionate about his advocacy work and being a role model for younger guys with Duchenne.
Hobbies: video games, Lego, military planes and hardware
Hometown: Marietta, OH
Education: Certificate in Health Information Technology; pursuing bachelor’s degree in Operations & Supply Chain Management (OSCM) at Franklin University
Jacob is the writer behind the blog, Extraordinary On Wheels, where he documents the extraordinary and adventurous life of living with a physical disability. He hopes to bring his diverse expertise and skillset to his dream job at Amazon. Jacob aims to live by one of his favorite Maya Angelou quotes: “My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”
Hobbies: Technology, research, innovation, hanging out with friends, watching YouTube, blogging, spending time outdoors
Kyle Van Houten
Hometown: Howell, MI
Education: undergrad at Bowling Green State University
Kyle is a busy undergrad at Bowling Green State University where he is active in his chapter of Sigma Nu Fraternity and hosts his own baseball radio show. In high school, Kyle was a 4-year state conference qualifier in DECA. He is a huge baseball fan and maintains a high-degree of independence as a college student living and studying on campus. Kyle is excited to bring his energy and expertise to the PAAC.
Hobbies: Hanging with friends, watching sports, stats
Hometown: Upper Tract, WV
With almost forty years of experience living with Duchenne, DJ is energized about helping younger generations of Duchenne individuals live their lives to the fullest.
Areas of Expertise: Political junkie
Hobbies: History, sports, motorsports, nature and just getting outside
Hometown: Arlington, MA
Education: Pursuing degree Mechanical Engineering, Bunker Hill Community College
Austin is the co-founder of One Rare, a non-profit focused on meeting the needs of young adults living with rare disease where he currently serves as board member and community outreach liaison. Austin spent 2 years as an intern for the second year at Solid Biosciences where he supported the team in their advocacy and gene therapy program. His accomplishments include an instrument of change award from the UCLA Center for Duchenne Muscular Dystrophy, a seat on the Parent Project Muscular Dystrophy (PPMD) Adult Advisory Committee, and multiple speaking engagements at rare disease events and congressional and regulatory briefings. Austin brings with him expertise in living with rare disease and mobility issues, participating in clinical trials and excelling in adaptive sports. In his free time he is a soccer player on a local power soccer team and enjoys adaptive skiing.
Hobbies: soccer, skiing, adaptive sports
Hometown: Collierville, TN
Education: Senior at the University of Memphis double majoring in Biology and Political Science with a minor in Spanish
Ravi is an advocate and disability trailblazer: he was the first full time wheelchair user in the history of his high school. He 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. He 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. Ravi is also a passionate traveler having visited over 20 countries worldwide and counting.
Hobbies: watching sports, video games, reading, listening to music, watching TED talks, hanging out with friends
Hometown: Corvallis, OR
Education: BS in Mathematics from OSU; PhD in Applied Mathematics from the University of Arizona; currently enrolled in postdoctoral scholar position in mathematics at Oregon State University
Patrik is a mathematics instructor at Oregon State University. His research interests center on applying mathematical methods based on geometry to problems in wave physics. He enjoys hanging out with his dog, "the amazing Fur Bullet" Katsu Kit. Rumor has it that this duo of delinquents can often be seen rolling the bike paths of Corvallis, leaving chaos in their wake. Patrik joined the PAAC because he has found much beauty and meaning in the world through Mathematics and Physics, and he would like to help support young people with MD as they navigate the education system.
Hobbies: Walking with his dog, crystals and minerals, history and culture, video games
Hometown: Chadds Ford, PA
Education: pursuing Associates in General Business
Jordan is an active volunteer in his hometown and advocate for the Duchenne community. He was recently chosen to speak at his high school graduation and is currently developing a podcast series based on his experiences living with Duchenne. Jordan aims to pursue a degree in General Business and continue working toward maintaining independence, getting his own car, and working on a memoir.
Hobbies: LEGOS, nature walks, video games, learning about the stock market
Hometown: Kalamazoo, MI
Education: BA Music and History, Hope College; MA Music and History Western Michigan University; enrolled PhD musicology University of Illinois
Colin has been involved with advocacy efforts since attending college where he served as president of the college’s Mortar Board chapter. Colin has traveled to Europe for scholarly pursuits on several occasions, most recently conducting archival research in Berlin, Germany. Outside of his educational pursuits, Colin enjoys attending concerts and is an active member of the First Congregational Church of Kalamazoo, where he sings in the choir and serves as the co-chair of the worship arts ministry team. In addition to serving on the PAAC, Colin is a member of the PPMD board of directors.
Hobbies: music, learning German, traveling with my family
Hometown: Statesboro, GA
Education: Bachelor Science in Sport Management, Georgia Southern University; MA Communication Liberty University
Steve is a writer for the Tomahawk Take, a website dedicated to covering all things related to Atlanta Braves baseball. The proud father of 3 and husband to wife, Aly, Steve and Aly co-host a podcast and YouTube channel titled “Teal Death Do Us Part,” focusing on interabled relationships and the challenges that come with living with a disability. Steve is a proud volunteer, notably for the Chick-fil-a kickoff game held in Atlanta, GA and the PGA Tour Championship, as well as interning for Georgia Southern Athletic Marketing. He is also an active member of his church, playing drums, running sound, and writing music as part of the worship team. On occasion Steve will also help create graphics and video for worship events. He is excited to be a part of the PAAC and is looking forward to focusing on ways to work with lawmakers to make systemic changes, giving future generations a higher quality of life and easier time navigating the Duchenne experience.
Hobbies: Writing and recording music, spending time with my family, running sound for my church, going to concerts, baseball, video games, movies, YouTube videos, collecting vinyl records
Hometown: Salisbury, MD
Education: BA Mechanical Engineering, University of Maryland, College Park
Adith’s passion for advocacy began in middle school after attending an MDA summer camp for the first time. His experiences inspired him to work on advocating for the needs of all people with disabilities. To that end, Adith modeled his beliefs by being the first wheelchair user in his middle school marching band and helping to design a special apparatus to hold his drum to his manual chair. He was also the first wheelchair user on his FIRST Robotics team in high school and played Unified Sports (Bocce and Tennis) in high school. In 2019, Adith wrote and submitted a document called the UMD Campus Accessibility Report to the Office of the UMD President, which outlined five major barriers to accessibility present at his university. This opened the door to a campus-wide conversation surrounding disability issues. He is a member of the President’s Commission on Disability Issues (PCDI) at UMD, a founder of the PCDI Student Advisory Committee, a member of the Mayor’s Disability Advisory Committee in Salisbury, and a Peer Mentor for the Christopher Reeve Foundation. Adith has also facilitated numerous workshops and events as part of Disability Awareness month at UMD where he had the opportunity to interview disability activist Judith Heumann. He looks forward to bringing his skills and expertise to the PAAC as well as connecting further with people in the Duchenne community. When he is not busy with school and advocacy, Adith is an avid traveler having been to Canada and India as well as to 18 states with an eventual goal of visiting all 50.
Hobbies: mentoring younger people (with and without MD), 3D modeling and printing, watching the Baltimore Ravens, watching/reading large amounts of Marvel content, watching comedy TV shows, doing stand up comedy, reading, listening to music, tabletop board gaming, and (attempting to) write my own book
Hometown: Staten Island, NY
A former field service technician for 31 years, Michael is an enthusiastic supporter of social programs. His extensive volunteer record includes: 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 other MD organizations. He is an avid gardener and traveler.
Hobbies: gardner, travel
Hometown: Jericho, VT
Education: BA Science degree in Environmental Studies from the University of Vermont (UVM)
Adam is a full-time AmeriCorps member, where he is a work-readiness mentor to youth and adults with disabilities. In 2019 he became a Certified Passive House Consultant to pursue his interest in the green building field. While pursuing his degree at UVM, Adam developed a passion for sustainable and universal design. To explore this interest, he guided a team to design an accessible, net-zero energy, modular home for a DOE competition in 2017. Adam has also worked as a Research Assistant at UVM and a Passive House Consultant. He aspires to pursue a career advising on building projects in both sustainability and accessibility. Adam has recently become more involved in advocacy, joining PPMD’s Adult Advisory Committee (PAAC) in 2020. Adam also serves on his town’s energy committee, the Jericho Energy Task Force, and is applying to become a Board member on Vermont’s Statewide Independent Living Council. He is also a proud Eagle Scout. Adam lives with his parents, a dog, and a cat in Jericho, Vermont, a small town east of Burlington. Adam has a younger brother who is a rising Senior at a university in Rhode Island.
Hobbies: Attending concerts, playing video games, reading, music, spending time with friends and family
Hometown: Farmville, VA
Education: Associate’s Degree in Information Technology (IT)
Colin currently works on web design and management for Letterpress Communications. He also volunteers at his local model railroad club. Colin joined the PAAC in 2016 to personally become an advocate for families and others living with Duchenne. He has been on multiple conference panels and has spoken at various PPMD community events. Colin strives to be a mentor and role model to parents of younger boys. In addition, he is a passionate advocate for Duchenne policy and research efforts. He has worked with multiple pharmaceutical companies (both in the US and internationally) to integrate the perspective of the adult community in their drug development and access programs. Colin is currently serving on a clinical trial advisory board with one of our industry partners. Colin lives at home with his parents, Diane and Alex, and spoiled dog Gigi. His younger sister Gwen attends boarding school.
Hobbies: Music, Traveling, Model Trains, Science and Technology, Advocacy, Sci-Fi
Hometown: Trevose, PA
Education: Pursuing Associates Degree in Graphic Design at Bucks County Community College
As a member of the PPMD Adult Advisory Committee, Jake enjoys helping people and being a mentor and advocate for others with duchenne and their families. Jake has testified in front of the FDA for access to treatments for Duchenne and enjoys public speaking, especially focusing on the MD journey. He has been an active member of the Duchenne and PPMD Community for most of his life. He hopes to work toward shaping medical policies for oher Duchenne patients. Jake lives his life to the fullest no matter what or as he likes to say, “I don’t suffer from Duchenne, it suffers from me.” Jake aims to follow up his Associates Degree with a Bachelors in Graphic Design from Temple University.
Areas of Expertise: graphic design, 3D printing, electronics, computers
Hobbies: building things, 3D printing, building computers, video games, designing/editing
Hometown: Alexandria, VA
Education: pursuing Criminal Justice degree, Northern Virginia Community College
James is an avid traveler having visited numerous states in America as well as Mexico, the UK, Germany, Italy, Czech Republic, and Iceland. He and his family have been active in the Duchenne community, participating in fundraisers, research initiatives, and various other events and programs. While in high school, James interned with the ENDependence Center of Northern Virginia: a community resource and advocacy center run by and for persons with disabilities. ECNV’s mission is to END dependence by empowering people with disabilities to live independently. Following the completion of his degree, James plans to pursue further education at George Mason University or Virginia Tech.
Hobbies: video games, building and fixing computers, wheelchair soccer, cars music, movies/TV, traveling, learning about modern US history
Hometown: Virginia Beach, VA
Education: Pursuing Bachelors in Computer Science, Old Dominion University
Chris is a passionate advocate for those in the Duchenne community and is especially interested in helping individuals become more empowered to independence. Chris believes in a high-level of self-motivation, which he achieves through his own efforts: running errands, making appointments, managing his own van repairs, managing fiscal responsibility, interviewing and hiring caregivers, and more. He is currently studying computer science, developing mobile games for iPhone, and recently won first place in a statewide FBLA mobile app competition.
Patrick Moeschen, Managing Director, PAAC
Diagnosis: Limb-Girdle 2E MD
Hometown: Salem, NH
Education: BA Music Education, University of Massachusetts, Lowell; Master Certificate Counseling and Human Relations, Liberty University
Patrick is a full time middle school music teacher, advocate, speaker, and Managing Director of the PPMD PAAC. In addition to teaching, Patrick is an advocate for children and adults with MD and has presented at disability conferences across the United States, as well as internationally in Australia, Italy, Belgium, and the Netherlands. In 2010, Patrick delivered the keynote address in Denver Colorado at the Parent Project Muscular Dystrophy Annual Connect Conference, and in 2018 presented a session on adult relationships and dating with MD in Chicago. In October of 2019, Patrick joined the Working Group on Pediatric Gene Therapy & Medical Ethics at NYU. Patrick lives with his wife Vanessa, and two sons, Timothy and Teddy in a handicap accessible home that they designed in Salem, NH.
Hobbies: Drums, music, travel, reading, spending time with my kids