PPMD Adult Advisory Committee (PAAC)

The PPMD Adult Advisory Committee (PAAC) serves to ensure that the voices of adults living with Duchenne & Becker Muscular Dystrophy are reflected in PPMD’s legislative, policy, and program activities. PAAC members serve in a formal advisory capacity for their respective term and maintain leadership over a PAAC initiative throughout that term; PAAC initiatives are determined by the PAAC membership and PPMD Executive Team. It is our intention that this leadership group will help PPMD continue to accelerate policy momentum and will begin to revolutionize the way that our emerging adult community is conceptualized.

The PPMD Adult Advisory Committee members kick-off the year by participating in PPMD’s Advocacy Conference — and then help to plan the Teens & Adults Track for PPMD’s Annual Conference each June.

Interested in joining the PAAC?

Applications for the 2021 PAAC are now open! Each fall, we seek new applicants for openings on the PAAC in the coming year. We strive for diversity as we compose the PAAC and encourage any member of our community with an interest in being a part of this leadership group to considering applying. For more information about joining the PAAC, email pmoeschen@parentprojectmd.org.

Apply

FACEBOOK GROUP: DUCHENNE/BECKER TEEN AND ADULT COMMUNITY

The PAAC has launched a Facebook group that gives people with Duchenne and Becker (and their loved ones) a safe place to discuss topics that are important to daily life. This group serves as a way to share resources and to address questions and concerns. Being a teen or adult with Duchenne or Becker brings unique challenges and opportunities and this is a platform to come together, knowing that you are not alone. Additionally, the PAAC shares their perspectives on a variety of topics and routinely post educational materials.

Join the Facebook Group

Meet the 2020 PPMD Adult Advisory Committee

Spencer Atkinson

Age:
Dx: Duchenne
Hometown: Fredericksburg, VA

“I have had experience in leadership in high school marching band staff, with a Campus Ministry in college for a few years and at my job as a manager for the past three years. My desire is to be on this board to make a difference for others with Muscular Dystrophy and their families. My greatest hope is to see people with Muscular Dystrophy and other disabilities thrive; living life to the fullest.”

Jenn Bauer

Age: 40
Dx: Manifesting Carrier of Duchenne
Hometown: New Jersey

After the death of her brother and former PAAC member Matt Petrusko, Jenn joined the PAAC in 2016 to help continue Matt’s extraordinary legacy. A devoted mom and wife with a background in business and elementary education, Jenn’s passion and expertise have been a strong complement to the team. In addition, as a manifesting carrier with significant muscle weakness, she has been able to help represent the priorities of female members of our Duchenne/Becker community. Jenn is very grateful that PPMD has made the health of DMD/BMD carriers an important initiative. After years on the PAAC, Jenn is glad to have the opportunity to continue to make connections with all the wonderful people she has met along the way.

Buddy Cassidy

Age: 29
Dx: Duchenne
Hometown: Annadale, VA – currently living in Irvine, CA

Buddy has been involved in advocating for and bringing public awareness to the challenges and successes of those with physical disabilities, particularly neuromuscular diseases, since he was a little boy. His advocacy efforts formalized as a student attending the University of Richmond when he would regularly meet with administrators on how to improve the accessibility of the campus for those with impaired mobility. His educational pursuits led him to a study abroad program at Oxford University and then back to the U.S. where he received an MFA from American University. Buddy previously worked as a docent at the Folger Shakespeare Library in Washington, D.C. and currently is attending the U. of California Irvine completing a PhD program in English literature.

As a member of the PPMD Adult Advisory Council, Buddy has testified at congressional briefings, helped to shape policy, and has served as a mentor to others within our community. In 2015, his work with the PAAC brought him in contact with the FDA where he learned of the FDA’s Patient Representative Program. Buddy now serves as a special government employee to the FDA, representing the Duchenne community.

Alan Chaulet

Age: 30
Dx: Duchenne
Hometown:

Lexington, Massachusetts

Alan Chaulet was born an entrepreneur and political advocate. With a degree in Management from Bentley University, Alan joined “All Wheels Up” in 2014. As co-founder over the last 6 years, 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 presenting around the world. 

Alan also works as the adult community advisor to PPMD’s Duchenne Registry and has tried creating several startups. He is incredibly passionate about entrepreneurship, improving the drug development process, and ensuring healthcare access for all with Duchenne and Becker.

Interests/hobbies: TV, Movies, Video Games, and Sports
Email: chaulet.alan@gmail.com

Sean Crosby

Age: 23
Dx: Duchenne
Hometown: Fort Mill, SC

Sean Crosby is an avid sports enthusiast and is often found announcing local sporting events and sports announcing. In addition to announcing for the Victory Sports Conquer League, he recently established his voiceover business, recorded a demo tape, and established a website.

Sean is passionate about his football ( he’s a diehard Panthers fan). Sean also enjoys playing chess and Xbox, listening to music, watching movies, meeting new people, and memorizing various stats and facts.

Sean is also very committed to contributing to his community and spends three days a week volunteering with adults with cognitive disabilities leading activities, small groups, and serving as a mentor at the Adult Enrichment Center. He also serves as an assistant chess coach for a local elementary school. Sean is employed with ABLE South Carolina and serves on their adult advisory council.

Ben Dupree

Age: 27
Dx: Duchenne
Hometown: Dallas, TX

Ben is a valued member of the PPMD community whose passion for Duchenne advocacy started at an early age as he met with members of Congress while in middle and high school and advocated for the passage of the MD-CARE Act. From 2015-2017, Ben served as a panelist and organizer of PPMD’s Transition meeting in conjunction with the Annual PPMD Connect Conference and was a passionate advocate during the EndDuchenne Hill Rally that June. Ben joined the PAAC in 2016 and has been making a significant impact.

Ben’s work with the PAAC brought him in contact with the FDA where he learned of the FDA’s Patient Representative Program. Ben now serves as a special government employee to the FDA, representing the Duchenne community. Ben also works with PPMD’s PCORnet program and is helping to lead a Mental Health Initiative within our Duchenne Community, in connection with The Duchenne Registry and the PAAC. PPMD recently nominated Ben to serve as a peer-reviewer to the Department of Defense Congressionally Directed Medical Research Program for Duchenne.

Ben has a degree in Biochemistry from Southern Methodist University and is pursuing a graduate degree in Social Work. He has also been involved in early exploration of the CRISPR Cas-9 study and its application to Duchenne.

Interests/hobbies: Improv comedy, board games, trying new foods, road trips
Email: btdupree@mac.com

Michael Gaglianone

Age: 23
Dx: Duchenne
Hometown: Mount Ephraim, NJ

“I want to be a PAAC member, because I bring a lot of experience to the table. I have participated in many panels at the PPMD annual conference and have also attended many advocacy conferences. Additionally, I have spoken to Congress to help pass The M.D. Care act. I think my experiences will be an asset to the PAAC.”

Jacob Hill

Age: 20
Dx: Duchenne
Hometown: Marietta, OH

Jacob actively writes on his blog, Extraordinary On Wheels, where he documents the extraordinary and adventurous life of living with a physical disability. He is currently pursuing a bachelor’s degree in Operations & Supply Chain Management (OSCM) at Franklin University and has a passion for working for Amazon upon graduation. He also holds a certificate in Health Information Technology. In his free time, he enjoys researching various topics, spending time outdoors, watching various YouTube channels such as Squirmy & Grubs (check it out, it’s incredibly amusing), and hanging out with friends. He chooses not to let DMD get in the way of his goals no matter what. Life is a rollercoaster, but Jacob strives to make the best of it and live life to the fullest! Life is an adventure! His favorite inspirational quotes are “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.” by Maya Angelou and “It’s Always Day 1” by Jeff Bezos.”

Interests/hobbies: Technology, research, innovation, hanging out with friends, watching YouTube, blogging
Email: skylarjoehill.h@gmail.com

Riley Jonatschick

Age: 19
Dx: Duchenne
Hometown: Pitt Meadows, Canada

Riley is a graduate of the Access Program for People with Disabilities at Kwantlen University, which provided employment training. He also has volunteer experience with Muscular Dystrophy Canada and in 4th and 5th grade classrooms at his former elementary school. Riley currently works as an assistant for a pool-based physiotherapy program with children and youth with disabilities. This job has provided Riley the opportunity to work with several boys who’ve recently been diagnosed with Duchenne.

DJ Kimble

Age: 39
Dx: Duchenne
Hometown: Upper Tract, WV

“The reason I believe I could help by being a part of the Adult Advisory Council is because I have my almost forty years of experience living with Duchenne, that I believe could be helpful to the younger generation of those of us with Duchenne. I believe I would most likely be interested in helping with everyday life and even the political aspects of life for those with disabilities, especially the Muscular Dystrophy area because I’m really a political junkie.”

Interests/hobbies: History, sports, motorsports, nature and just getting outside
Email: dj_kimble99@yahoo.com

Austin Leclaire

Age: 20
Dx: Duchenne
Hometown: Arlington, MA

A young adult living with Duchenne. Austin is an active member of the rare disease community. As the co-founder of One Rare, a non-profit focused on meeting the needs of young adults living with rare disease, his role is as a board member and community outreach liaison. He is currently a student at Bunker Hill Community College with a goal of a Mechanical Engineering Degree. 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. 

Email: ausmax12@gmail.com

Ravi Lipman

Age: 20
Dx: Duchenne
Hometown: Collierville, TN

Hi, my name is Ravi Lipman. Like most of the men in this group I have Duchenne Muscular Dystrophy. I am from Memphis, Tennessee. I’m a senior at the University of Memphis double majoring in Biology and Political Science with a minor in Spanish. I currently live with my parents and have two older sisters who are both in medical school. I am passionate about traveling and I have visited over 20 countries worldwide.

I have overcome many barriers throughout my life. I was the first person at my high school to be a full time wheelchair user in the history of the school. I was a trailblazer and opened up the opportunity for more disabled students in the future. I have overcome lack of accessibility by being my own best advocate and speaking out about my needs. I have interned at The Ecological Society of America, where I learned about the importance of advocacy that affects policy development in government and in the community. I am 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. I am also a member of the PAAC (Parent Project Adult Advisory Committee), which represents the patient voice at PPMD. My favorite things to do in my free time are watching sports (I watch soccer, hockey, football, basketball, and sometimes rugby), playing video games (I’m on xbox one), reading, listening to music (alternative rock is my favorite genre of music), watching TED talks, and hanging out with friends. My best quality is my curiosity. I am reserved but I am extremely opinionated so I’m always open to a friendly debate about morality, politics, sports, and well basically anything. My favorite sports teams are the Buffalo Bills, Buffalo Sabres, Memphis Grizzlies, and the Memphis Tigers.

I’m planning on going to law school afterward. I graduate from the University of Memphis. I wish to continue my advocacy work at PPMD through the PAAC for many years to come. I ultimately envision myself running for political office and becoming a champion for disability rights. I wish to inspire others to go after their dreams no matter how improbable they may seem. This motivation to lead and inspire change is driven by my values of justice and equity. My drive to make the world more just and more fair for all people is what gets me out of bed every morning.

Email: ralipman@memphis.edu

Dylan Miceli-Nelson

Age: 19
Dx: Duchenne
Hometown: CA, Los Angeles

Dylan has been actively engaged in advocacy and research for most of his life, having participated in clinical trials and natural history studies, PPMD roundtables and presentations, an FDA advisory committee meeting and was featured in People magazine. When he was thirteen, Dylan launched a social media campaign to raise awareness for DMD. He contacted social media influencers Smosh and Dude Perfect and asked if he could shoot a video with them so people with disabilities are better represented. These two videos have over 30 million views and remain very popular. Due to this, Dylan has been able to grow his instagram and youtube viewership where he has focused on presenting his perspective as a disabled person living in an ableist world.

Patrik Nabelek

Age: 30
Dx: Becker
Hometown: Corvallis, OR

Patrik is a mathematics instructor at Oregon State University, and will begin a postdoctoral scholar position in mathematics at Oregon State University in Fall 2020. Patrik’s research interests are in applying mathematical methods based on geometry to problems in wave physics. Patrik received a BS in Mathematics from OSU and a PhD in Applied Mathematics from the University of Arizona.

Patrik 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.

Interests/hobbies: Walking with his dog, crystals and minerals, history and culture, video games.
Email: patrik@alyrica.net

Colin Rensch

Age: 26
Dx: Duchenne
Hometown: Kalamazoo, MI

Colin attended Hope College, where he was elected to the Phi Beta Kappa Society and graduated with a bachelor’s degree in music and history in 2016. While at Hope, Colin was actively involved in disability advocacy efforts and served as the president of the college’s chapter of Mortar Board. Since graduating from Hope, Colin has pursued graduate studies at Western Michigan University, working as a teaching assistant and earning master’s degrees in music and history respectively. Colin has traveled to Europe for scholarly pursuits on several occasions, most recently conducting archival research in Berlin, Germany. He will be starting a PhD program in musicology at the University of Illinois this fall. Outside of school, 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.

Interests/hobbies: music, learning German, traveling with my family
Email: colinrensch@gmail.com

Alex Toalson

Age: 22
Dx: Duchenne
Hometown: Lincoln, NE

Alex is a recent graduate from the University of Nebraska Lincoln with a degree in biological sciences and is now pursuing a graduate degree in biomedical research to find treatments for diseases such as Duchenne muscular dystrophy.
Alex is particularly passionate about utilizing assistive technology to overcome physical barriers. He has personally used assistive technology in such a way that has allowed him to be successful despite requiring a wheelchair full time for mobility and having limited use of his hands. With this experience, he would like to help other adults living with Duchenne muscular dystrophy.

Email: atoalson95@gmail.com

Michael Voto

Age: 60
Dx: Becker
Hometown: Staten Island, NY

Michael was formerly a field service technician for 31 years, loves to travel and garden, and has extensive volunteer experience (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 others aiding MD).

Raymond Walter, PhD

Age: 26
Dx: Duchenne
Hometown: Mountain Home, AR

At 26 years old, Dr. Raymond Walter has a Ph.D. in physics at the University of Arkansas. He is a data scientist working remotely for the marketing technology company Kinesso. He has ten published papers and has held highly competitive research fellowships from the National Science Foundation and the U.S. Department of Energy. Raymond’s inspirational story of graduating with a triple major from the university at age eighteen, despite his Duchenne Muscular Dystrophy diagnosis, has been shared in many venues. His advocacy for agricultural education to young audiences has received state and national recognition from the Arkansas FFA Association and the National FFA Organization. He has advocated for self-advocacy and autonomy of disabled individuals through TEDxFayetteville and disability awareness events.

Interests/hobbies: dogs, music, good food, spending time with my fiance
Email: raymondwalter94@gmail.com

Adam Wechsler

Age: 24
Dx: Duchenne
Hometown: Jericho, VT

Adam graduated from the University of Vermont in 2018 with a B.S. in Environmental Studies, and is passionate about working in the environmental field, specifically on green building, planning, and universal design. He is currently serving as a full-time AmeriCorps member at ReSOURCE in Vermont, helping to divert waste from the landfill and supporting students in training programs with barriers to employment. In his free time, Adam enjoys spending time with friends, attending concerts, playing video games, watching TV and movies, and reading. He also volunteers on the Jericho Energy Task Force in my community.

Colin Werth

Age: 25
Dx: Duchenne
Hometown: Farmville, VA

Colin graduated from community college in 2015 with an Associate’s Degree in Information Technology (IT). He has been working the past 5 years for local marketing firm Letterpress Communications helping design (and manage) websites for clients. In his free time, Colin volunteers at his local model railroad club.

The Werth Family have been supporters of PPMD since Colin was diagnosed with Duchenne in 1998. Colin joined the PAAC in 2016 to personally become an advocate for families and others living with Duchenne. He has been on multiple conference panels and has spoken at various PPMD community events. Colin strives to be a mentor and role model to parents of younger boys. In addition, he is a passionate advocate for Duchenne policy and research efforts. He has worked with multiple pharmaceutical companies (both in the US and internationally) to integrate the perspective of the adult community in their drug development and access programs. Colin is currently serving on a clinical trial advisory board with one of our industry partners.

Colin lives at home with his parents, Diane and Alex, and spoiled dog Gigi. His younger sister Gwen attends boarding school.

Interests/hobbies: Music, Traveling, Model Trains, Science and Technology, Advocacy, Sci-Fi
Email: cjrailstar@gmail.com

Jake Wesley

Age: 20
Dx: Duchenne
Hometown: Trevose, PA

Hello Everyone! I am 20 years old, currently obtaining my Associates Degree in Graphic Design. I am currently in my third year at Bucks County Community College. Once I obtain my Associates Degree I plan to transfer to Temple University to get my Bachelors in Graphic Design. I like to do as much as I am capable of on my own and independently like making doctors appointments, managing my finances, speaking to my doctors, paying for my van, get my own groceries and medications, hang out with friends, etc. in my free time when I am not at school or managing my medical care I enjoy building things, 3D printing, designing and editing, 3D printing, building computers, playing video games, and playing with electronics. I went to a vocational technical high school were I studied engineering so I love electronics. I try to live my life to the fullest no matter what life throws at me and whatever Duchenne throws at me. “I don’t suffer from a Duchenne, it suffers from me”. I am available to answer any questions or help with anything for Duchenne families and patients. Like I said live life to fullest no matter what happens. Please don’t hesitate to email or text me with any questions you may have or about Duchenne and my expertise in things like graphic design, 3D printing, electronics, computers, and even video games. I love to chat!

As a member of the PPMD Adult Advisory Committee, I enjoy helping people and love being a mentor and Advocate for others with duchenne and their families. I have testified in front of the FDA for access to treatments for Duchenne, Sat in many Congressional offices to get approvals. I enjoy getting up in front of people and talking about Duchenne. I have been an active member of the Duchenne and PPMD Community for most of my life. I am passionate about helping people get access to treatments for Duchenne. I hope to help shape the medical policies needed for oher Duchenne patients.

Email: Jakester2000@verizon.net

Chris Younkin

Age: 20
Dx: Duchenne
Hometown: Virginia Beach, VA

Hi Everyone! I’m 22 years old, currently studying Computer Science, and developing mobile games for the iPhone. Recently, I won first place in a statewide FBLA mobile app competition. I am starting my Bachelors in Computer Science at Old Dominion University this year. As a member of the PPMD Adult Advisory Committee I care deeply about advocacy. I also care about assisting people like me to make decisions on their own.

I do a lot independently. I facilitate my own van repairs, get my own medicine, make my own appointments, sign up for classes, run errands, meet with friends, hired a lawyer, built my own computer, attend events, manage money, got my own cell phone plan, changed insurances, interviewed and hired caregivers, scheduled nursing and much more. I have a lot of great things going on in my life. I hope to be an influence for showing people with Duchenne how to advocate for themselves.

Email: younkin427@gmail.com

Patrick Moeschen, Advisor to the PAAC

Born: 1972
Dx: Limb-Girdle 2E MD
Hometown: Salem, NH

Patrick is a full time middle school music teacher, diagnosed with Becker Muscular Dystrophy in 1985, and re-diagnosed with Limb-Girdle 2E MD in 2012, who continues to lead an active life working in education and MD advocacy.

Patrick received his Bachelor of Arts degree (Magna Cum Laude) from University of Massachusetts Lowell in 1995 and began teaching middle school band and music at Woodbury Middle School in Salem, NH. Achieving a Master in Counseling and Human Relations from Liberty University in 2006, Patrick continues to teach full-time, as well as maintaining a private home studio of percussion students weekly. He was awarded the Teacher of The Year for the state of New Hampshire in 2007 by the Wal-Mart corporation.

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 Australia, Italy, Belgium, and the Netherlands. In 2010, Patrick delivered the keynote address in Denver Colorado at the Parent Project Muscular Dystrophy national 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.

Interests/hobbies: Drums, music, travel, reading, spending time with my kids.
Email: pmoeschen@parentprojectmd.org