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.

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James “Jim” Camalick

Hometown: Burr Ridge, IL

Education: Studied Economics at Benedictine University and Accounting at Liberty University

I'm a 42 year-old with Duchenne, but do not let that stop me from being a man on the move. I love to go on adventures whether that be sporting events, concerts, food festivals, or museums. My passion is to visit all the different baseball stadiums across the country. I'm an avid sports fan who likes to track statistics and keep up on all of the latest sporting news. In my free time, I love to hang out with my large family.

Anthony Castle

Hometown: Phoenix, AZ

I like to hike, game, snow ski, and go to the movies with friends. I go to a day program where I'm learning skills to hopefully volunteer or get a job in the future. I love to travel and I'm always coming up with new adventures to do.

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Seth Cate

Hometown: Edgewood, KY

My name is Seth and I live in northern Kentucky. I’m a senior in high school and work at the front desk of Immanuel Church where my father is Executive Minister. I’m working on getting an internship after I graduate.

Hobbies: gaming, building LEGOs, programming, and digital art

Alan Chaulet

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

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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.

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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.

Jake Fritz

Hometown: Pottstown, PA

Hi, I'm Jake Fritz, I'm 19 and am diagnosed with Duchenne Muscular Dystrophy. I graduated high school in 2021 and am currently taking online college courses but am undecided on a major. A strength of mine is that I have a good sense of empathy for others and am always looking for ways that the lives of those affected with muscular dystrophy can be improved. The things that interest me are playing video games, learning about politics/history, and building computers.

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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

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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.

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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

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Tyus Hill

Hometown: Dallas, TX

My name is Tyus Hill, I am a 22 year old with DMD from Dallas, Texas. I am currently a senior in college majoring in Broadcast and Digital Journalism. I have been to 29 different MLB stadiums over the years and collected baseballs from all the stadiums I've been to (including the Texas Rangers, the 2023 World Series Champions). Some things I enjoy doing in my free time are: spending time with my family, going to sporting events, taking my service dog Finnick for walks, watching sporting events, playing video games, and traveling.

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.

William Judge

Hometown: Oakton, VA

Education: Majoring in Psychology and minoring in Data Science at George Mason University

Hi, I’m William and I have Becker MD. I have always been interested in architecture and more recently how architecture can serve as a form of social justice. I also have a large interest in video games which has led me to participate in a variety of social groups based on some of the games I play. I’m in my sophomore year of college studying psychology and also live on campus.

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

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

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Austin Leclaire

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

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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

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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.

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Patrik Nabelek

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

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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.

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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

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Cal Quitzau

Hometown: Mansfield, MA

Education: Mansfield High School

Cal is the firstborn of triplet siblings and the only one diagnosed with Duchenne Muscular Dystrophy. During the COVID-19 Pandemic, Cal started connecting more with others who have Duchenne Muscular Dystrophy through virtual events and activities. Recently joining PAAC, Cal hopes to make a difference by educating others about living with Duchenne and being a positive role model for younger people living with neuromuscular disorders.

Hobbies: Building computers, learning about history, playing video games, watching movies, listening to classic rock music, hanging out with family & friends, and attending Camp Promise East each summer (favorite place on earth!)

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Jordan Reidenberg

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

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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

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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.

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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.

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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.

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Josh Singh

Hometown: Odenton, MD

My name is Josh I’m a senior in high school aiming to attend Princeton University. My hobbies include Lego, video games, Singing, and cooking. My goal for the Duchenne community would be to create a company that specializes specifically in Duchenne care and that also provides training to caregivers and aids on how to properly care for people like us.

Cory Stalling

Hometown: Missoula, MT

Education: Majoring in Environmental Science and Sustainability and minoring in Nonprofit Administration at University of Montana

I’m Cory Stalling and I have Duchenne Muscular Dystrophy. I am going to school for environmental science and sustainability. I have always believed that you shouldn’t let disability stop you from doing what you love. I have volunteered for civic engagement nonprofits such as MontPIRG and environmental government organizations such as the forest service. Activities and hobbies I enjoy doing include kayaking, writing poetry and going to punk shows in Missoula Montana at the local dive bar scene. I’ve experienced a lot as a person with a disability and I’m proud to be an advocate for the greater community of those who deal with physical disability.

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.

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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

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Adith Thummalapalli

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

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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

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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

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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

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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 attends Mount Holyoke College.

Hobbies: Music, Traveling, Model Trains, Science and Technology, Advocacy, Sci-Fi

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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

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Dain Wiseman

Hometown: Peoria, AZ

Dain got involved in the Duchenne community by creating the "Better Quality for Duchenne Life" Facebook page. He enjoys helping others and believes that we can achieve greatness by advocating and bringing awareness. Dain is a music enthusiast as well as a documentary enthusiast. Dain also lives his life by a quote he read from Bruce Lee "If you always put limits on everything you do, physical or anything else. It will spread into your work and into your life. There are no limits. There are only plateaus, and you must not stay there. You must go beyond them."

Hobbies: Video games, documentaries, learning, and socializing.

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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

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Patrick Moeschen, Managing Director, PAAC

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

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