by: Parent Project Muscular Dystrophy
PPMD’s Adult Advisory Committee (PAAC) welcomes 10 new members this year, bringing the group to a total of 36 individuals living with Duchenne/Becker!
We range in age from 18-63 and continue to amplify the patient voice in areas of local and national advocacy, defining what adult care should look like, and working with industry to ensure the patient voice is heard when designing clinical trials.
Welcome Anthony, Taylor, Jake, Keenan, William, Ethan, Jack, Charlie, Nevin, and Suhail to the 2023 PAAC.
GO PAAC!
Get Involved with the PAAC
The PAAC opens to new members in November of each year, however if you missed the deadline or are under the age of 18, there are plenty of ways to connect and get involved with the PAAC year-round! Visit the PAAC page to learn more about our:
- Bi-weekly socials (open to all teens and adults with Duchenne/Becker ages 14+)
- Mentoring
- Game nights on Discord
Or simply reach out to talk to us!
Meet the 2023 PPMD Adult Advisory Committee
2023 officer board
- President: Colin Werth
- Vice President: Adith Thummalapalli
- Secretary: DJ Kimble
- Historian: Jake Wesley
- Officer at Large: Mallory Dupree
Seth McSwain
Hometown: Knightdale, NC
Education: Bachelor of Science in Geography from the University of North Carolina at Charlotte
Seth McSwain graduated from the University of North Carolina at Charlotte in 2024 with a degree in Geography. Seth lives with Becker Muscular Dystrophy, and hopes to be the best advocate for people with muscular dystrophy. Seth has also worked for a nonprofit for over a year now, and wants to help in any way he can. Seth lives in Charlotte, NC with his fiancé Lily.
Areas of Expertise: Geography (GIS), cartography, nonprofits, and computers
Hobbies: motorsports, video games, listening to music, and going on trips to Florida
Christopher "Buddy" Cassidy
Hometown: Annandale, Virginia
Education: BA English Language and Literature from University of Richmond, MA English Literature from American University, pursuing PhD in English Literature from UC Irvine
Buddy began advocating for and bringing public awareness to the challenges and successes of those with physical disabilities, particularly neuromuscular diseases, at a very young age. His advocacy efforts were formalized while a student at the University of Richmond. He regularly met with administrators on how to improve the accessibility of the campus for those with impaired mobility. As a member of the PPMD Adult Advisory Committee, Buddy has spoken at numerous PPMD conferences, attended congressional briefings, helped to shape policy, and has served as a mentor to others within our community. During his time away from the PAAC spoke to U.N. diplomats about the importance of passing a resolution granting World Duchenne Awareness Day official U.N. Recognition.
Areas of Expertise: Patient advocacy in the development and approval of treatments for rare disease; Global Duchenne Community; Mental Health; Sexuality
Hobbies: Watching telenovelas, Golden Age Hollywood films, horror, and Food Network. But mostly telenovelas. Theatre- watching it of course and sometimes working with actors behind the scenes.
Seth Cate
Hometown: Edgewood, KY
Education: High School Graduate
Seth lives in northern Kentucky. He works at the front desk of Immanuel Church where his father is Executive Minister. Seth is working on getting an internship now that he has graduated from high school.
Areas of Expertise: Animation, Programming, Art
Hobbies: gaming, building LEGOs, programming, and digital art
Cody Chalfan
Hometown: Columbus, OH
Education: Communication Analysis and Engagement, The Ohio State University
Cody has Duchenne Muscular Dystrophy and graduated from Ohio State University in 2024. His experiences as a disabled adult have fueled his passion for advocacy. He hopes to inspire and motivate disabled teenagers to achieve their dreams with his experiences and background in communication. In his spare time Cody loves to write, explore random topics, and enjoys watching his beloved Ohio State Buckeyes and Columbus Blue Jackets.
Areas of Expertise: Advocacy, communication, volunteering
Hobbies: Writing, watching sports, listening to music, photography, and birding
Alexander Cliff
Hometown: Santa Fe, NM
Education: Graduated high school in 2016, Completed a BA in Mathematics, Minor in Computer Science at California State University, San Bernardino
Born and raised in Southern California, Alexander Cliff was diagnosed with DMD following a family vacation in Italy at roughly about 9 years old. Currently, he lives with his parents either in California or New Mexico depending on the season. He is participating in the PAAC for the first time with the sole purpose of helping other adults with Duchenne to navigate the complexities of living with this disability, whether it’s school, healthcare, or living independently.
Areas of Expertise: Math and computer science
Hobbies: Playing video games (usually in a game involving factories), reading, watching films and TV, enjoying nature and art
Brayden Cream
Hometown: Valley, Nova Scotia, Canada
Education: Graduated high school in 2023 and is in the last semester of Business Administration at the Nova Scotia Community College in Nova Scotia, Canada
Brayden Cream was born and raised in Truro, Nova Scotia, Canada. Brayden was diagnosed with DMD at the age of 1 year old. He lives with his parents and younger brother. Brayden is passionate about hockey and wheelchair accessibility. He is participating in PAAC because he wants to have a community of other like-minded individuals with DMD. Brayden is also interested in helping other adults navigate life with DMD.
Areas of Expertise: Technology, writing, public speaking, and business
Hobbies: Playing video games; watching YouTube; watching and discussing hockey; hanging out with my friends; writing wheelchair accessibility reviews about places I visit; travelling; and watching comedy movies
Ernest Docs
Hometown: Virginia Beach, VA
Ernest has BMD. He advocates for equal access and treatment for the disabled in their daily lives. Ernest has participated in clinical trials, natural history studies, and investigational studies supporting therapy development for DMD/BMD.
Areas of Expertise: CMAA (Certified Medical Assistant), CBCS (Billing & Coding Specialist) ADA Expert and Advocate, Social Media
Hobbies: Travel, Music, Movies, and Spending Time with Family & Friends
William Hancock
Hometown: Melrose, MA
Education: 2020 Graduate of Melrose High School, 2024 Graduate of Merrimack College with a Bachelor of Science in Computer Science with a Minor in Communication and Media
William Hancock was born in Weymouth, Massachusetts in 2002 and resides in the Boston area with his parents, his paternal grandmother, his dog, and two cats. William enjoys traveling and going on trips with his family. He also enjoys making friends wherever he finds himself including multiple gaming Discord servers. Currently, William is enrolled in the Masters in Data Science program at Merrimack College and intends to begin looking for employment in the coming new year.
Areas of Expertise: Computer Science, Communication, Public Speaking
Hobbies: Gaming, playing games with friends, technology, traveling, taking things apart, and helping others
Martin Hodapp
Hometown: Sharpsburg, GA
Education: Studied US and European history at University of Hawaii at Hilo from 2008-2017
Martin was born in Honolulu in 1991 and moved to Atlanta in 2021. He has DMD (exon deletion 46 - 48). Martin was MDA State Goodwill Ambassador for Hawaii in 2000 and 2001. He is an avid traveler both in Europe and the US, has visited several capital cities, and has 2 total solar eclipses under his belt. Every trip seems to come with a new complexity to master, but he hasn’t let that stop him yet. Planning trips these days is like planning a moon landing including calculating amp hours of the ventilator batteries. He served on the Chancellor's Committee for Access during college. He was a board member of Disability Rights Hawaii from 2009-2021; served as president for 1 year in 2017. He wants others to know that they can live well with a ventilator. He currently lives with his parents.
Areas of Expertise: Planning travel, fig growing, online research, advocacy
Hobbies: Audiobooks, watching TV (especially historical fiction), playing RTS computer games, gardening with my mother (I am the brains, and my mother is the muscle), spending time with family, planning vacations, attending concerts, and frequenting museums
Adam Malone
Hometown: Ridgeland, MS
Education: Currently attending Hinds Community College
Adam lives with Duchenne muscular dystrophy and is from Ridgeland, Mississippi. He is a travel advisor specializing in accessible travel with the agency Adventures by Jamie. He wants to break the stereotype of disabled people not wanting to get out there! Throughout his life, he has had a passion for trying to make a difference in the disability community. When he was 8 years old, he, with the help of his family, created an accessible playground through his non-profit Adam’s Project. Adam is also an avid traveler, and he has been to so many awesome places, with his current favorite city being Orlando, Florida. He also is the host and executive producer of The Handicapable Podcast, a podcast focused on raising awareness about and advocating for the disability community. Adam wants to make a difference in the world, and his goal in life is to do what he can to inspire others to get out there and chase their dreams!
Areas of Expertise: Accessible travel, public speaking, disability advocacy
Hobbies: Traveling, exploring new foods
Tom Meyering
Hometown: Tampa, FL
Education: 2017 graduate from the University of South Florida with a Bachelor's degree in Psychology
Tom was born in St. Louis, Missouri, but has lived in Tampa, Florida since 1998. He graduated in 2017 from the University of South Florida with a Bachelor's degree in Psychology and volunteered for the Muscular Dystrophy Association helping to secure sponsors for the yearly gala. He enjoys spending time with family and friends and taking trips to Disney World. Tom is a big sports fan, with the NBA and NFL being his favorites and enjoys watching movies, particularly action and science fiction. He also has a golden retriever named Millie.
Areas of Expertise: Worked with the Muscular Dystrophy Association
Hobbies: Playing video games, attending and watching sporting events, watching movies, volunteering, and attending concerts
Aditya Nair
Hometown: Tampa, FL
Education: Previous: BS in Computer Science from the University of Florida; Current: MS in Computer Science with a specialization in AI from Georgia Tech
Aditya lives independently in Tampa, Florida, and thrives with Duchenne Muscular Dystrophy (DMD). He works as an InFlight Software Engineer at Lockheed Martin, balancing a dynamic career with a vibrant social life. Aditya enjoys studying, spending quality time with friends, and pursuing his passions for travel, design, and creativity. An avid traveler, he has explored Belgium, France, Germany, India, Italy, the Netherlands, Spain, Switzerland, and the United Kingdom. He loves attending clubs and EDCs, decorating his home, striking up conversations with strangers, and building intricate LEGO creations. Aditya joined PAAC to inspire others in the DMD community and to give back to the network of individuals who have supported and motivated him throughout his journey. He hopes to make a meaningful impact and continue to foster connection and inspiration.
Hobbies: Communicating, Decorating, LEGOs, Organizing, Traveling
Eli Perez
Hometown: Olympia, WA
Education: Associate of Science, Sports Management from Waubonsee Community College
Eli and his twin brother Jonah were diagnosed with Duchenne when they were eight years old. Eli volunteers at the nonprofit PeerOlympia doing reception work. His strongest subject in school was reading and world history. Eli’s life goal is to get a job where he can earn his own money and be more independent. He has strong organizational and time management skills. Eli believes DMD does not mean his life is not good; even though it has its unique challenges, for the most part, it is like everyone else's.
Areas of Expertise: Volunteering
Hobbies: Sports, Playing with his cats, Watching Anime
Joel Poysky
Hometown: Katy, TX
Education: 2021 High school Graduate from The Briarwood School Houston TX and currently a sophomore at Houston Christian University
Joel was born in Houston, Texas. He graduated from a small private K-12 school in 2021. After High school Joel was enrolled in a local community college until he transferred in 2024 to a 4-year university. He is now a Sophomore at Houston Christian University. Joel enjoys spending time with his family and service dog named Marino. When not in school, he volunteers at a program for adults with developmental disabilities at his church where he was also an intern previously. Joel has attended several PPMD annual conferences and went to advocacy to meet with his Senators and Congressmen last Spring with PPMD.
Areas of Expertise: Advocacy, Volunteering
Hobbies: playing video games with friends; Listening to classic Rock on his Record player (Led Zeppelin, Fleetwood Mac, and Rolling stones); watching Movies and TV shows in all genres; playing card and board games; taking his service dog Marino out around town with him
Garrett Sapp
Hometown: St. Petersburg, FL
Education: 2024 high school graduate from Wellmont Academy in St. Petersburg, FL
Garrett Sapp, born in Nashville, Tennessee, now calls St. Petersburg, Florida, home. A 2024 graduate of Wellmont Academy, Garrett finds joy in spending time with his family and his two dogs, Leo and Zoe. He also enjoys volunteering with his local church’s food ministry Food is Love. He has also participated in the annual RunDisney Marathon Weekend for the past 10 years with his team Garrett’s Heroes, embracing the challenge and magic of the event while raising money for PPMD.
Areas of Expertise: Graphic design, data entry, fundraising
Hobbies: Playing video games; participating in the RunDisney PPMD events; watching action and adventure films; hanging out with his 2 dogs Leo and Zoe, caring for his pet tortoise and gecko
Quinten Stoops
Hometown: Port Charlotte, FL
Education: General Educational Development Certificate
Quinten Stoops was born and lived in Kansas City Missouri for 21 years. He now resides in Port Charlotte, Florida. Quinten completed his GED and earned his Eagle Scout rank in early 2019. His passion is helping animals and nature. He has volunteered at animal shelters or zoos for about 15 years and currently has been fostering kittens and other special needs cats. Quinten’s free time is spent playing video games, talking to friends online and listening to music.
Areas of Expertise: conservation education, computer aided drafting (CAD)
Hobbies: playing video games, collecting die-cast cars, watching baseball, fishing and going on walks with my family
Wayne Valley
Hometown: Hampshire, IL
Education: 1993 high school graduate from St Charles High School in Saint Charles, IL, 2002 college graduate from Elgin Community College in Elgin, IL, 2005 college graduate with my Bachelor’s Degree in Business Administration from Columbia College of Missouri (satellite campus of Crystal Lake, and Elgin, IL)
Wayne Valley, born in Miami Florida, now calls Hampshire, Illinois, home. Wayne enjoys time with his 2 dogs and finds joy in spending time with his family. He also enjoys working for his current employer for the last 25 years as an Assistant Route Manager. He has been going to Gainesville for the last 3 years for the research study for BMD. He also enjoys giving used equipment (wheelchairs, ramps, walkers and clothing) to people that can not afford it. Wayne has raised funds for MDA years ago.
Areas of Expertise: Able to multitask at my job, dealing with different people's personalities in different types of communication
Hobbies: Working in the garage; watching Dateline and 20/20; spending time with my future wife and my 6 year old boy; watching action and adventure films; hanging out with my 2 dogs, Harry and Violet. Looking for houses and land in Florida
Joseph “Seph” Ware
Hometown: Altavista, VA
Education: History degree from Liberty University
Joseph Ware was born in Monroe, Louisiana, and now resides in Altavista, Virginia. He will graduate from Liberty University in May 2025 with a Bachelor's degree in History. He is an Eagle Scout and a lover of history. He enjoys hanging out with his friends in person or online, and he loves his family.
Areas of Expertise: History
Hobbies: Writing music, Playing Video Games, and live Streaming on Twitch
Chris Younkin
Hometown: Virginia Beach, VA
Education: Studied Computer Science at Tidewater Community College
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.
Areas of Expertise: Programming, Technology
Hobbies: video games, building and fixing computers, flying drones, mobile app development
Ethan Atterson
Hometown: New Castle, IN
Education: BS Music with Composition Focus, Ball State University; currently pursuing Master of Arts in Music, Ball State University
Ethan Atterson is a composer/conductor based in Indiana pursuing a master’s degree in music at Ball State University from which he graduated with a BS in Music (2023). During his time as an undergrad, Ethan performed in several Ball State ensembles including the Choral Union and the Pride of Mid-America Marching Band. He is also an alumni of the Nu Upsilon chapter of Kappa Kappa Psi at Ball State. Going into his final semester of his MA, Ethan will be pursuing a research project focused on disability inclusion in the classical music field. By joining the PAAC Advisory Board, Ethan hopes to advocate for better disability inclusion in the performing arts and to encourage ambitious young people with DMD to fight for their goals in life.
Areas of Expertise: Leadership, problem solving, creativity, organization
Hobbies: Music, traveling, learning, history, and spending time with family/friends
Jennifer Bauer
Hometown: Colts Neck, NJ
Education: BS Business Administration, Seton Hall, BA Elementary Education, Kean University
Jenn is always working to keep her brother’s legacy alive. Her brother, Matt, was part of the original PAAC group. After he passed, she gladly took over for him. As a sister to a brother with DMD and female with dystrophinopathy, she has seen Duchenne through many different lenses. Jenn is raising awareness for all the females who carry the DMD gene. She is so proud to be a part of an amazing group of individuals in the PAAC. She is a wife and mom in New Jersey. She loves the NY Mets and country music.
Areas of Expertise: Business Administration, Education, Public Speaking
Hobbies: Sports (Baseball), Listening to Country Music
James “Jim” Camalick
Hometown: Burr Ridge, IL
Education: Economics - Benedictine University, Accounting - Liberty University
Jim has Duchenne and turned 40 years old in 2021, but does not let that stop him from being a man on the move. He loves to go on adventures whether that be sporting events, concerts, food festivals, or museums. Jim’s passion is to visit all the different baseball stadiums across the country. He’s an avid sports fan who likes to track statistics and keep up on all of the latest sporting news. In his free time, Jim loves to hang out with his large family.
Areas of Expertise: Economics, Accounting, Life
Hobbies: Sports (Baseball, Statistics), Music, History, Food, Socializing
Anthony Castle
Hometown: Phoenix, AZ
Education: High School Graduate
Anthony likes to hike, game, snow ski, and go to the movies with friends. He goes to a day program where he's learning skills to hopefully volunteer or get a job in the future. Anthony loves to travel and is always coming up with new adventures.
Areas of Expertise: Accessible Travel, Adaptive Sports, Volunteering
Hobbies: Traveling, Adaptive Sports, Video Games, Going to the Movies, Socializing
Alan Chaulet
Hometown: Lexington, MA
Education: Bachelor of Science in Management from Bentley University
Alan is an Entrepreneur fighting Duchenne Muscular Dystrophy. He graduated from Bentley University in 2013 with a Management Degree and since 2014 has been working alongside the founder as the Vice President of All Wheels Up, the first not-for-profit organization in the world to fund research and development for a “wheelchair spot” on commercial aircraft. The not-for-profit organization is working with airline carriers and aircraft manufacturers to make airplanes wheelchair accessible for the millions of people who depend on them for mobility and safe seating.
Areas of Expertise: Accessible Air Travel, Entrepreneurship, technology, policy, public speaking
Hobbies: TV, reading, technology, politics
Mallory Dupree
Hometown: Dallas, TX
Education: Bachelor of Science in Biochemistry with a minor in Computer Science from Southern Methodist University
Mallory Dupree is an individual living with Duchenne Muscular Dystrophy (DMD) whose experience in Duchenne advocacy began as a teen meeting with members of congress to advocate for the passage of the MD-CARE Act. Since graduating with a Bachelor of Science in Biochemistry from Southern Methodist University in 2015, Mallory has served in a variety of roles within the advocacy space. Mallory has been a member of PPMD's Adult Advisory committee since 2016 where she has represented the growing number of adults living with DMD and helped to guide PPMD's initiatives to address this community. Beyond working with PPMD, Mallory has served in various government roles as a representative of the community of individuals living with DMD. The first of these is FDA’s Patient Representative Program, where Mallory served as a special government employee and a member of the April 2016 FDA advisory committee for the now-approved DMD treatment Eteplirsen. Secondly, in late 2018, Mallory was nominated by PPMD to serve as a consumer reviewer for the Department of Defense Congressionally Directed Medical Research Program for Duchenne. Mallory continues to serve with this program each year, providing patient input on the potential impact of DMD related grants that the Department of Defense is considering funding.
Areas of Expertise: Biochemistry, Drug Development, Advocacy, Public Speaking, Leadership
Hobbies: Video games, board games, trying new foods, trying new hobbies
Taylor Ferrell
Hometown: Phoenix, AZ
Education: Bachelors in Computer Science from Arizona State University
Taylor studied computer science at Arizona State University. He loves programming, making, and hanging out with his friends. He hopes to help the disability community with his inventions.
Areas of Expertise: Programming, Computers, Inventing
Hobbies: Video Games, Programming, Socializing
Kyle Friar
Hometown: Grand Rapids, MI
Education: Studying Marketing at Davenport University
Kyle is a full time student working towards a degree in Marketing at Davenport University. He is the captain of his power soccer team and plays an active role in his family’s fundraising events to End Duchenne. Kyle has attended numerous PPMD annual conferences where he has spoken on panels and participated in focus groups. He has also been a part of PPMD’s Advocacy conference since 2015. Kyle lives in West Michigan with his parents and his two dogs.
Areas of Expertise: Marketing, Fundraising, Public Speaking
Hobbies: Power Soccer
Michael Gaglianone
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.
Areas of Expertise: Traveling, Advocacy
Hobbies: sports, video games, Lego, military planes and hardware
Jacob Gapko
Hometown: Eau Claire, WI
Education: Bachelor of Science in Physics, University of Wisconsin-Eau Claire; Masters of Library and Information Science, University of Wisconsin-Milwaukee; Specialist in Library and Information Studies, University of Wisconsin-Madison
Jacob is a research librarian, life coach, consultant, advocate, and writer. Jacob connects people to informational resources, both written and human. Doing this on Facebook led him to connect with Family, Friends and Duchenne (FFD). He writes articles for FFD and now is their Chief Information Officer. He currently serves as Council President of University Lutheran Church. He is in a long-term relationship with his girlfriend Sasha.
Areas of Expertise: information research, information needs, higher education, travel, and living a full life with Duchenne
Hobbies: Reading, writing, watching movies, Dr. Who, early music, and Australian Rules Football
Keenan Gluck
Hometown: Denver, CO
Education: 2017 Graduate of Colorado Academy
Keenan Gluck enjoys working and volunteering for various political organizations, as well as acting in plays and musicals in the Denver metro area. He is glad to be a member of the PAAC and is fortunate to help build upon the community that the PAAC has helped to cultivate among those with DMD and BMD as well as their families. He is also an avid fan of all Denver sports teams.
Areas of Expertise: Acting, Networking, Community Building
Hobbies: theater, volunteering, politics, sports
Jacob Hill
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 skill set 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.”
Areas of Expertise: Business start-ups, Writing
Hobbies: Technology, research, innovation, hanging out with friends, watching YouTube, blogging, spending time outdoors
Tyus Hill
Hometown: Dallas, TX
Education: Bachelors in Broadcast and Digital Journalism from the University of North Texas
Tyus Hill graduated in 2024 with a degree in Broadcast and Digital Journalism from the University of North Texas. He has been to 29 different MLB stadiums over the years and collected baseballs from all the stadiums he’s been to (including the Texas Rangers, the 2023 World Series Champions). Tyus has a service dog named Finnick and enjoys taking him for walks.
Areas of Expertise: Journalism, Public Speaking
Hobbies: Sports (Baseball), Video Games, Traveling, spending time with friends and family
Elliott Johnson
Hometown: Downingtown, PA
Education: Studying Audio Music Production with a minor in Music Business at Lebanon Valley College
While DMD can make Elliott’s life difficult at times, he does not let his condition hinder him from pursuing his aspirations in life. He has made it onto the dean’s list his first two semesters with a current cumulative GPA of 3.96 and lives on campus. Besides his membership to the PAAC, Elliott is an active member of Lebanon Valley College’s campus, serving as the social chair for the Iota Kappa Chapter of Phi Mu Alpha Sinfonia, the world’s oldest and largest secret national fraternal society in music, performing synthesizer within various ensembles, such as the Pride of the Valley Marching band, and as an active member of LVC’s Audio Engineering Society.
Areas of Expertise: Music Production, Audio Engineering, Public Speaking
Hobbies: Music, Video Games, Socializing, Marching Band
Kevin Kearney
Hometown: Orangeburg, NY
Education: Studying Information Technology at Rockland Community College
Kevin turned 21 years old in 2023. He loves gaming, watching movies and hanging out with his friends and family. Kevin has two dogs named Andrew and Schmoo. He is glad to be on the PAAC with friends who understand his disability.
Areas of Expertise: Information Technology
Hobbies: Video Games, Socializing, Movies
DJ Kimble
Hometown: Upper Tract, WV
Education: High School Graduate / Duchenne Patient Academy
Operations Manager / Podcast Host / Life Coach / Blogger - Family, Friends and Duchenne; Community Ambassador - Jett Foundation; Secretary - Adult Advisory Committee (PPMD) With over forty years of experience living with Duchenne, DJ is energized about helping his peers, the younger generation, and their families, to not just survive, but to thrive, and live their best lives!
Areas of Expertise: Advocacy, Politics / Legislation
Hobbies: History, Sports, Motocross, Music, Nature, Living Life
Ravi Lipman
Hometown: Collierville, TN
Education: Bachelors in Biology and Political Science with a minor in Spanish from University of Memphis, Juris Doctor (JD) from The University of Memphis Cecil C. Humphreys School of Law
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.
Areas of Expertise: Law, Political Science, Biology, Public Speaking
Hobbies: watching sports, video games, reading, listening to music, watching TED talks, hanging out with friends
Reece Littleton
Hometown: Raleigh, NC
Education: Pursuing degree in Communication Studies at the University of North Carolina Wilmington
The power of a community for those living with the same rare condition is immense and can be super impactful. Reece learned the importance of community after living independently in college and interning for two nonprofits. As PPMD is a nonprofit organization, Reece hopes to bring his nonprofit experience to the PAAC to further its mission. Currently he has an internship on campus at UNC Wilmington, is heavily involved in his major, and is president of a college club.
Areas of Expertise: Public Relations, Volunteering, Nonprofits
Hobbies: Public Speaking, Public Relations, Volunteering
William Ma
Hometown: Dublin, OH
Education: Pursuing Doctor of Pharmacy degree at The Ohio State University
William is currently enrolled in the PharmD program at The Ohio State University and wants to help patients get the care and support they need. A big reason for his decision to go to pharmacy school is to help pay back the community which has helped him so much with his healthcare. William is a team captain on The Ohio State’s Esports team.
Areas of Expertise: Healthcare, Drug Development
Hobbies: Esports, spending time with family and friends, reading, and watching TV shows
Guilherme “Gui” Panhota
Hometown: São Paulo, Brazil
Education: Economics, Insper São Paulo/West Virginia University
Gui is an economist working in the financial markets for some years, having worked at Bank of America in Brazil, also with experience as an entrepreneur in the investments advisory sector. During university in Brazil, he had an exchange program in West Virginia University, living independently by himself in the university dorm, away from his family in Brazil. It was an incredible experience. Gui lives with Duchenne Muscular Dystrophy with his parents and younger sister in São Paulo, Brazil. Every year, he comes to the US for medical appointments in a Duchenne clinic and, since then, has started to have contact with Duchenne associations in the US and in Brazil. Gui has joined the PAAC with the goal of making new friends with Muscular Dystrophy, sharing experiences and helping younger people with Duchenne with the daily challenges and living the life at its fullest. He is also working to create a group in Brazil similar to the PAAC and on other advocacy projects for Duchenne in Brazil. Gui has traveled to more than 10 countries with his family, he likes to try new food and places and is really into playing video games.
Areas of Expertise: Economics, Investing, Public Speaking, Portuguese
Hobbies: Traveling, Food, Video Games
Jonah Perez
Hometown: Lacey, WA
Education: Bachelors in Journalism from the University of Illinois at Urbana-Champaign
Jonah and his twin brother Eli were diagnosed with Duchenne when they were eight years old. Jonah received his bachelor's degree in Journalism from the University of Illinois at Urbana-Champaign. He has recently been working as a substitute paraeducator in his local school district. Jonah is obsessed with football and sports in general. He also loves history, superheroes and anime.
Areas of Expertise: Journalism, Teaching
Hobbies: Sports (football), History, Superheroes, Watching Anime
Jonathan Piacentino
Hometown: Penfield, NY
Education: Bachelors in Biology with minors in Chemistry and Toxicology from Nazareth University
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 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.
Areas of Expertise: STEM, Drug Development, Public Speaking, Advocacy
Hobbies: Fantasy RPGs and Card Games, Volunteering
Dhruv Prasad
Hometown: Dublin, OH
Education: Bachelor's degree in English from The Ohio State University
Dhruv graduated with a Bachelor of Arts in English. He enjoys literature, deconstructing various texts, watching action movies, playing multiplayer video games, and having family get-togethers.
Areas of Expertise: English Literature, Drug Development
Hobbies: Literature, watching action movies, and playing multiplayer video games
Ethan Pyles
Hometown: Reading, PA
Education: High School Graduate
Ethan has been an advocate since he was 6 years old and enjoys being an ambassador for his rare disease. He lives with his Mom, Brother, and Stepdad. Ethan is very eager to help the DMD/BMD community in any way that he can.
Areas of Expertise: Life
Hobbies: Spending time with family and friends, video games, and helping others in the disabled community
Colin Rensch
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. He 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.
Areas of Expertise: Music, Leadership, Public Speaking, Advocacy
Hobbies: music, learning German, traveling with my family
Jack Ridolphi
Hometown: Richmond, VA
Education: Studying Mechanical Engineering at Virginia Commonwealth University
Jack has Duchenne and currently lives on campus at Virginia Commonwealth University, located in Richmond, VA, where he studies mechanical engineering. In his free time, Jack plays power soccer for the Central Virginia Vipers and is a member of Model UN at VCU. Since he first heard about the PAAC, Jack knew it was something he was interested in. He believes the PAAC serves an important role as it gives a sense of community and belonging to those with Duchenne and Becker. Growing up with Duchenne, finding others like him was difficult, but after discovering PPMD and the PAAC, it became a lot easier to connect. As a member of the PAAC, Jack looks forward to working with and aiding those within the Duchenne community.
Areas of Expertise: Engineering, Public Speaking
Hobbies: Power soccer, video gaming
Charlie Riesebeck
Hometown: Gainesville, FL
Education: Bachelors in Biology from NC State
Charlie Riesebeck has a bachelor’s degree in Biology. He lives with Becker Muscular Dystrophy and enjoys video games, boating, and hanging out with friends. Charlie lives in Tampa, Florida with his girlfriend Emily, where he works as a clinical research coordinator at a cancer hospital. Charlie hopes to use his unique perspective as both a patient and a research professional to advocate for people with muscular dystrophy.
Areas of Expertise: Biology, Clinical Research, Public Speaking
Hobbies: Video games, socializing
Dominic “Dom” Romito
Hometown: Firestone, CO
Education: High School graduate
Dom and his two younger brothers Collin and Kaleb have Duchenne. At the moment he is trying to live out his dream of becoming a full time streamer on Twitch. In his free time Dom likes to go on “walks” and listen to audiobooks or music. He considers himself a coffee connoisseur and loves sushi and authentic Mexican food. A fun fact about Dom is that he has 10 tattoos.
Areas of Expertise: Gaming, Coffee, Video Production
Hobbies: Listening to music and audiobooks, Video Games, Socializing, Going out to eat, Getting tattoos
Ryan Russell
Hometown: Kansas City, MO
Education: Associates in Anthropology, Eastern Arizona College, Bachelors in Liberal Studies and Masters of Education in Counseling and Human Relations from Northern Arizona University, Ph.D Psychology from North Central University (now National University)
Ryan is a Mindset & Health Coach, and Author with a passion for empowering individuals and families living with DMD. In April 2024, Ryan married Angela; Together, they coach, speak, and advocate as they navigate the joys of life as a blended family. Ryan is now a proud stepdad to a teenage son with DMD and a daughter who is a junior in college. Their shared experiences bring unique insights and empathy to their advocacy efforts. He is committed to showing that individuals with DMD can achieve their dreams. Ryan’s parents passed away in 2021, prior to he managed their in-home care, then lived independently until getting married. He understands the patient and parent side of DMD, and is always happy to share, he is also an Eagle Scout.
Areas of Expertise: Mindset Coaching, Health and Wellness Coaching, Social Media, Public Speaking, Education, Writing, Service, and Chickens
Hobbies: Travel, Volunteering, Writing, Content Creation, Video Games, and Cat wrangling
Nevin Steiner
Hometown: Weathersfield, CT
Education: Bachelors in Journalism from Loyola University Maryland
Nevin lives productively with Becker Muscular Dystrophy. He is a huge New York sports fan, Yankees, Knicks and Jets. Nevin works as a video producer at ESPN and his greatest accomplishment in life is getting married and having two kids. As he ventures on his journey as an advocate, Nevin says it’s not about what you can't do, but about what you can do.
Areas of Expertise: Video Production, Public Speaking
Hobbies: NY Sports fan, spending time with friends and family
Steven Teal
Hometown: Statesboro, GA
Education: Bachelor of Science in Sport Management from Georgia Southern University; Master of Arts in Communication from 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.
Areas of Expertise: Communication, Public Speaking, Audiovisual Production, Sports Blogging
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
Adith Thummalapalli
Hometown: Salisbury, MD
Education: BA Mechanical Engineering, University of Maryland, College Park
Adith joined the PAAC in 2020 and currently serves as its Vice President. He currently works as an Infrastructure Engineer for the City of Salisbury, where his job involves ensuring ADA and accessibility compliance of public spaces and transportation infrastructure. Adith serves on three internal PPMD committees and as a speaker for PPMD conference sessions and other Duchenne organizations, has facilitated and spoken on a number of disability and mental health panels, and has served in numerous patient advocate capacities for pharmaceutical industry partners, academic institutions, the FDA, and the DoD. He currently serves on the All Wheels Up wheelchair user committee, the board of his local Center for Independent Living and The Coordinating Center, a Maryland-based case management nonprofit. He is part of the Mayor’s Disability Advisory Committee in Salisbury and has been a guest lecturer for an engineering course about designing for accessibility at his alma mater since 2019. Adith lives at home with his mom, dad, and grandmother and has a younger brother who attends Temple University. He is also an avid traveler, having been to 20 states, Canada, and India, with the goal of traveling to all 50
Areas of Expertise: Engineering, Leadership, Public Speaking, Disability Advocacy, 3D Modeling and Printing
Hobbies: Watching, writing and performing standup comedy, playing Dungeons and Dragons and other tabletop RPGs, watching football, reading superhero comics, watching tv and movies, and attempting to write his own novel
Kyle Van Houten
Hometown: Howell, MI
Education: Bowling Green State University '22
Kyle is a graduate of Bowling Green State University with his bachelor’s degree in marketing. Kyle currently works for PNC Bank as a Customer Service and Support Representative. He is self-described a huge baseball fan and sports fan, especially all Detroit teams.
Areas of Expertise: Communication, computers
Hobbies: Hanging with friends, watching sports, stats
Michael Voto
Hometown: Staten Island, NY
Education: High School Graduation
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.
Areas of Expertise: Volunteering, Nonprofits, Independent Living
Hobbies: gardening, traveling
Adam Wechsler
Hometown: Jericho, VT
Education: B.S. Environmental Studies from the University of Vermont (UVM)
Adam is a passionate disability advocate, having served on both the PAAC and the Vermont Statewide Independent Living Council since 2020. On the SILC, Adam has become the Vice Chair and Chair of the Housing Committee, advocating for systems level change in housing for people with disabilities. He is also an aspiring GIS Consultant (yay maps!), finishing a GIS certificate in March 2025. Adam wants to work on projects related to community livability and resilience. Fun fact: Adam is an avid concert goer and has attended well over 100 shows! Adam lives at home in Jericho, VT with his parents, two golden retrievers, and 1 cat. He has a younger brother who is a civil engineer.
Areas of Expertise: Environmental Science, Public Speaking, Housing, GIS, Writing
Hobbies: Attending Concerts, Reading, Watching TV and Movies, Playing Video Games, Spending Time with Friends and Family
Colin Werth
Hometown: Farmville, VA
Education: Associate’s Degree in Information Technology (IT)
In addition to serving as the PAAC President, Colin works as an IT specialist for Letterpress Communications. He 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 currently serves on multiple clinical trial advisory boards with our industry partners. Colin lives at home with his parents Diane and Alex. His younger sister Gwen graduates from Mount Holyoke College in 2025.
Areas of Expertise: STEM, Drug Development, Public Speaking, Data Management and Organization
Hobbies: Music, Traveling, Trains, Science and Technology, Advocacy, Sci-Fi Movies and TV, Video Games
Jake Wesley
Hometown: Trevose, PA
Education: Associate’s Degree in Graphic Design, Pursuing a Bachelor’s Degree in Psychology
Jake is a Freelance Graphic and Web Designer with a strong foundation in design from Bucks County Community College, now pursuing a psychology degree at DeSales University. He skillfully integrates design aesthetics with psychological principles, using tools like Figma, Webflow, and Adobe to create designs that are not only visually appealing but also deeply resonant on a psychological level. His creative process is heavily influenced by his personal experience with Duchenne Muscular Dystrophy, driving him to craft designs that connect with users in a meaningful way. In addition to his design work, Jake is a committed advocate within the Duchenne community. As a member of the PPMD Adult Advisory Committee, he has been active in mentoring others, testifying before the FDA for access to Duchenne treatments, and engaging in public speaking, particularly focusing on the journey with muscular dystrophy. His lifelong involvement in the Duchenne and PPMD community fuels his passion for shaping medical policies that can improve the lives of others with Duchenne.
Areas of Expertise: Graphic/Web Design, 3D Printing, Computers/Electronics, Advocacy
Hobbies: Listening to Music, Playing Video Games, Designing/Editing
James Wood
Hometown: Alexandria, VA
Education: Studying Criminal Justice at Radford University
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.
Areas of Expertise: Technology, Advocacy, Traveling
Hobbies: video games, building and fixing computers, wheelchair soccer, cars music, movies/TV, traveling, learning about modern US history
Patrick Moeschen, Managing Director, PAAC
Hometown: Salem, NH
Education: Bachelor of Music Education (Magna Cum Laude), UMass Lowell, Master of Arts, counseling and human relations with a specialization in adolescence, Liberty University
A human being since 1972, Patrick Moeschen recently retired after 28 years of teaching music at the middle school level in a public school setting. He was diagnosed with Becker Muscular Dystrophy in 1985, and re-diagnosed with Limb-Girdle 2E MD in 2012. Patrick is also an instructional coach for new teachers throughout the United States, as well as an international motivational speaker. Mr. Moeschen lives with his wife Vanessa, and two sons, Timothy and Teddy in a handicap accessible home that they designed in New Hampshire, where he continues to instruct kids in percussion, and the art of making music.
Areas of Expertise: Counseling, mentoring, music, public speaking
Hobbies: Travel, reading, attending concerts, writing
About the PAAC
PPMD’s Adult Advisory Committee (PAAC) amplifies the teen and adult voices of Duchenne, Becker, and carriers as an extension of Parent Project Muscular Dystrophy (PPMD). The PAAC takes a holistic approach to advocacy by addressing care, community, and quality of life. We work together to elevate the lives of individuals living with Duchenne and Becker through mentorship, outreach, and education.
