Who We Are
PPMD Adult Advisory Committee (PAAC) members participate in PPMD’s Advocacy Conference and help to plan the Teen & Adult Track for PPMD’s Annual Conference for teens and adults living with Duchenne, Becker, as well as those with a carrier status.
You do not have to be a PAAC member to be an active participant with us. We host socials, gaming nights, and other fun stuff throughout the year. Connect with us now.
PAAC Officer Board
President
Colin Werth
Vice President
Adith Thummalapalli
Secretary
DJ Kimble
Historian
Tyus Hill
Officer at Large
Alan Chaulet
Meet the Current PAAC Members
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
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
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
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
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
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.
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: Biochemistry from Southern Methodist University
Mallory 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, Mallory served as panelist and organizer of PPMD’s Transition meeting at the Annual PPMD Connect Conference as well as participating in the End Duchenne Hill Rally. Mallory has been a PAAC member since 2016 where they became involved with the FDA’s Patient Representative Program, serving as a special government employee to the FDA to represent the Duchenne community. They have also worked with PPMD’s PCORnet program and helped to lead a Mental Health Initiative within our Duchenne Community. In late 2018, PPMD nominated Mallory to serve as a peer-reviewer to the Department of Defense Congressionally Directed Medical Research Program for Duchenne. Mallory has served with this program since early 2019. They have also been involved in exploration of the CRISPR Cas-9 study and its application to Duchenne. Mallory currently serves as the Vice President of the PAAC.
Hobbies: Improv comedy, board games, trying new foods, road trips
Taylor Ferrell
Hometown: Phoenix, AZ
Taylor is a senior studying 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.
Kyle Friar
Hometown: Grand Rapids, MI
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.
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.
Hobbies: 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 46 years old with Duchenne. He 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
Keenan Gluck is a 23-year-old with DMD, he lives in Denver Colorado. He 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.
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 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
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: Major in Audio Music Production, 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.
Kevin Kearney
Hometown: Orangeburg, NY
Education: Studying Information Technology at Rockland Community College
My name is Kevin and I am 21 years old. I love gaming, watching movies and hanging out with my friends and family. I have two dogs Andrew and Schmoo. What I look forward to most about being on the PAAC is meeting new friends that understand my disability.
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: 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
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.
William Ma
Hometown: Dublin, OH
I am currently enrolled in the PharmD program at The Ohio State University and want to help patients get the care and support they need. A big reason for my decision is to help pay back the community which has helped me so much with my healthcare. At school I am also part of the Esports team as the team captain. When I can, I enjoy 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.
Jonah Perez
Hometown: Lacey, WA
I was diagnosed with Duchenne when I was eight years old and got my bachelors in Journalism from the University of Illinois at Urbana-Champaign. I’ve been working as a substitute paraeducator in my local school district. I’m obsessed with football and sports in general. I love history, superheroes and anime.
Jonathan Piacentino
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 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.
Dhruv Prasad
Hometown: Dublin, OH
Education: Pursuing Bachelors degree in English
Dhruv is currently attending college studying for a Bachelor of Arts in English. He enjoys literature, deconstructing various texts, watching action movies, playing multiplayer video games, and having family get-togethers.
Hobbies: Literature, watching action movies, and playing multiplayer video games.
Ethan Pyles
Hometown: Reading, PA
My name is Ethan Pyles. I'm 20 years old and live with DMD. I have been an advocate since I was 6 years old and enjoy being an ambassador for my illness. I live in Reading Pennsylvania with my Mom, Brother, and Stepdad. I'm very eager to help the DMD/BMD community in any way that I can.
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. 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
Jack Ridolphi
Hometown: Richmond, VA
Hello! My name is Jack Ridolphi and I have Duchenne Muscular Dystrophy. I currently live on campus at Virginia Commonwealth University, located in Richmond, VA, where I study mechanical engineering. In my free time, I play power soccer for the Sportable Hive and am a member of Model UN at VCU. Since I first heard about the PAAC, I knew it was something I was interested in. I believe 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 me was difficult. But, after discovering PPMD and the PAAC, it became a lot easier to connect. As a new member of the PAAC, I look forward to working with and aiding those within the Duchenne community.
Charlie Riesebeck
Hometown: Gainesville, FL
Originally diagnosed with Duchenne, Charlie has the unique experience of growing up as a Duchenne child and living adult life as a person with Becker. He hopes to bring his energy and experience to the PAAC, and raise awareness for people who have Duchenne misdiagnoses. Charlie lives independently in Gainesville, FL, and works at the University of Florida helping with research on Duchenne and Becker muscular dystrophy.
Dominic “Dom” Romito
Hometown: Firestone, CO
Hey my name is Dom Romito, I am 23 years young and I have Duchenne. At the moment I am trying to live out my dream of becoming a full time streamer on Twitch. In my free time I like to go on “walks” and listen to audiobooks or music. I consider myself a coffee connoisseur; I love sushi and authentic Mexican food. A fun fact about me is that I have 10 tattoos.
Ryan Russell
Hometown: Safford, AZ
Education: Masters in Education, Ph.D Psychology
Ryan is a Life Coach, Consultant, advocate, and Author of Rectify the Avenging Angel. He is an Eagle Scout, an active member of his church, and loves being an uncle. Ryan's parents recently passed away, and he now lives independently with a caregiver who lives on his property. He also loves chickens and had them until the neighbors' dogs visited in October. Ryan wants to go beyond helping families and individuals live well with Muscular Dystrophy. He wants to help the younger generation excel and show that people with Duchenne Muscular Dystrophy are just like everyone else in their thoughts and dreams.
Areas of Expertise: The Psychological Effects of Social Media, independent living, education, awesomeness, and humility.
Hobbies: Playing computer games, traveling locally, writing bad poetry, and half decent fan fiction in his spare time.
Nevin Steiner
Hometown: Weathersfield, CT
I am 39 years old and live productively with Becker Muscular Dystrophy. I am a huge New York sports fan, Yankees, Knicks and Jets. I work as a video producer at ESPN and my greatest accomplishment in life is getting married and having two kids. As I venture on this journey as an advocate, it's not about what you can't do, but about what you can do.
Steven Teal
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
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
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
Adam Wechsler
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
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: 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
James Wood
Hometown: Alexandria, VA
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. James is studying Graphic Design at Radford University.
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
