Years ago, a friend of mine named Tom Bailey who had Duchenne wrote a memoir that he entitled, Moving Mountains Without Muscles. As I look at the tremendous accomplishments of PPMD’s Adult Advisory Committee since we first launched this leadership group 2 years ago, I am astounded by how much passion, expertise, and effort each member has dedicated to moving mountains for our Duchenne/Becker community.
In two short years, the PAAC members have helped to formalize the voice of the emerging adult Duchenne community. They have engaged regulators, policy makers, industry, and Congress – and members of the PAAC now serve as patient representatives to industry DSMBs, NIH Councils, FDA’s patient representative program, the CDC’s Care Considerations workgroups, and more. They have informed our efforts with outside partners such as our work with the ABLE implementation, and have helped lead initiatives such as PPMD’s robotics initiative and our mental health study. Simply put, the PAAC is moving mountains.
As Colin Rensch, a PAAC member from Kalamazoo, MI reflected,
“Serving on the PPMD Adult Advisory Council this past year was a tremendous learning experience for me. Until this point, advocacy had involved breaking down barriers in my own life. [Participating in the PAAC] taught me how to advocate for the whole Duchenne and Becker community. It was exciting to be able to combine civic responsibility with my new-found passion to advocate for the DBMD community.
It fills me with great joy and gives me tremendous hope to know that such awesome people are working to end Duchenne and Becker. I am excited to continue to work alongside the members of the PPMD community and to see what great things we accomplish next.”
We are so grateful to the members of PPMD’s Adult Advisory Committee who have served our community so generously and proudly in 2015 and 2016; we are indebted to them for their service.
As we look at the year ahead, the Duchenne landscape is filled with unparalleled opportunities. 2017’s landscape also includes an unpredictable policy environment making it even more crucial that we have an adult advisory committee comprised of Duchenne/Becker experts who are well positioned to provide leadership and guidance to PPMD as we navigate the challenges and opportunities before us.
Please join us in welcoming our 2017 PAAC – and thanking them for leaning in to help shape the Duchenne landscape:
I am thrilled to introduce the men and women who comprise the 2017 PPMD Adult Advisory Committee. The 2017 PAAC includes members with diverse academic and professional backgrounds including law, engineering, finance, sports broadcasting, education, literature, biochemistry, communications, international affairs, management, and more. They are men and women from around the nation who whose common thread is a shared commitment to contributing to PPMD’s Duchenne/Becker community. And together, they are changing our world.
Hometown: Pendleton, Oregon
Susana (Susie) Arroyo is a twenty-seven year old woman with Duchenne Muscular Dystrophy from a small town in Eastern Oregon named Pendleton. She is very involved in her community, volunteering with nursing homes, serving as a mentor to young children and teens, and working within her church community. In addition to serving on PPMD’s Adult Advisory Committee, Susie also serves on the board of the Clearview Mediation and Disability Resource Center. Susie has a Bachelor’s degree in Elementary Education and Multidisciplinary Studies from Eastern Oregon University.
Dx: Manifesting Carrier, Duchenne
Hometown: New Jersey
After the sudden death of her brother and former PAAC member Matt Petrusko, Jenn joined the PAAC to help continue his extraordinary legacy. A devoted mom and wife with a background in business, 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.
“I first joined the PAAC last year as an outlet for my grief. At first, I was nervous about how a manifesting carrier would fit in. The members of the PAAC were so welcoming and I saw a part of Matt in each and every one of them. I was absolutely blown away by all the wonderful, smart, caring, and talented men that are a part of the PAAC. I also was so impressed to meet a lot of their family members. We all are part of a larger group, people that are fighting the beast of BMD/DMD. I feel like I belong, I know Matt is guiding me though this and I am so thankful that I was given this opportunity.” ~ Jenn Bauer
Hometown: Annandale, Virginia
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 currently works as a docent at the Folger Shakespeare Library in Washington, D.C. and has applied to PhD programs 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. He also volunteers at Walter Reed Naval Hospital.
Home state: Massachusetts
Alan Chaulet was born an entrepreneur and political advocate. With a degree in Management from Bentley University, Alan immediately launched his first business called ‘Badass Ability’. Over the last two years, Alan has been making a federal policy impact as co-founder of All Wheels Up, an organization working with federal aviation officials and engineering professionals to enable passengers remain in their wheelchairs during air travel. Alan also works as the adult community advisor to PPMD’s DuchenneConnect. He is incredibly passionate about improving the drug development process and ensuring healthcare access for all with Duchenne and Becker.
Hometown: Canton, MA
Michael is currently a student at the University of Massachusetts Boston, studying communications and sports broadcasting. Diagnosed with Duchenne at age 3, Michael has been dedicated to serving others. His community engagements have included work as a peer leader at Partners Youth with Disabilities, and working as a counselor for the Easter Seals Camp for children with Autism. In addition to attending college, Michael is also interning with Solid Biosciences in Cambridge, Massachusetts.
Hometown: Fort Mill, SC
Sean is an avid sports enthusiast and is often found announcing local sporting events and announcing for the Victory Sports Conquer League – but the sport he is most passionate about is football (and he’s a die hard 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.
Home state: Maryland
Mario Damiani has worked as a Compliance Specialist at the United States Access Board since February 10, 2014, where he handles complaints received as part of the Board’s Architectural Barriers Act enforcement programs. Prior to joining the Board, he spent seven-and-half years working as a Policy Advisor at the U.S. Department of Labor’s Office of Disability Employment Policy where he focused on accessible workplace technology and Section 508 issues, workplace accommodations, the development and implementation of Executive Order 13548, and the Department’s Section 503 agenda. Prior to that, he worked at the District of Columbia Department of Health as an Attorney-Advisor from 2003-2006 (including handling issues related to the licensure of medical professionals in the District), a law clerk at the District of Columbia Office of Bar Counsel from 2002-2003 assisting in the handling of attorney disciplinary matters, and a law clerk for the Senior Judges of the District of Columbia Court of Appeals in 2001-2002. He attended college and law school at The Catholic University of America; during law school he completed internships at the Office of the United States Attorney for the District of Maryland and the Offices of the Montgomery County and Prince George’s County State’s Attorneys.
Mario and his wife Theresa have been strong contributors to the PPMD community. Through his role on the PAAC, Mario has helped to shape critical policy initiatives and has served on the planning committees for PPMD’s Transitions Meetings. In 2016, Mario served as the Chairperson of the PPMD Adult Advisory Committee.
Hometown: Dallas, Texas
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. In 2015, 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 End Duchenne 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 DuchenneConnect and the PAAC.
Ben has a degree in Biochemistry from Southern Methodist University and is pursuing a graduate degree in Genetic Counseling. He has also been involved in early exploration of the CRISPR Cas-9 study and it’s application to Duchenne.
Home state: Maryland
Brett was born and raised in northern New Jersey and was diagnosed with Becker muscular dystrophy at age 9. Brett received his B.S. in Justice Studies from Arizona State University in 2003 and his J.D. from the University of Texas School of Law in 2007. After graduating law school, Brett clerked for the Honorable Diane M. Johnsen on the Arizona Court of Appeals before moving to Baltimore to work as the inaugural Disability Rights Fellow at Brown, Goldstein & Levy, LLP. He currently works as an Assistant Attorney General in the Maryland Office of the Attorney General, where he provides a wide variety of advice and litigation services for the Boards that regulate the health occupations and license health professionals in Maryland. Brett previously served on the Board of Directors of the Maryland Disabilities Forum, and he currently sits on the Board of Directors of the American Civil Liberties Union of Maryland and serves as the Board’s Affirmative Action Officer. Brett also serves as volunteer facilitator of a teen support group with the MDA in Baltimore. He lives in Baltimore City.
Mo has been an unwavering advocate for our Duchenne community on all levels for decades. Through his participation in PPMD-led efforts such as the Draft Guidance for Industry and the development of the patient preference survey instrument, Mo has inserted the critical perspective of the adult community. Mo has also worked to advance therapy development through both his academic pursuits and internship experiences including work under Dr. Hansell Stedman, as well as personal participation in interventional studies. Mo lives independently in Philadelphia, holds a BA in Economics & International Relations from the University of Pennsylvania, and a masters degree in Finance from Vilanova School of Business.
Hometown: Plantation, Florida
Alex is a journalism major in his junior year at Broward College in Davie, Florida and is pursuing a life-long dream to become a sports journalist. Having been diagnosed with Duchenne at age 2 ½, he has been an integral part of the Duchenne community and attended PPMD’s Transitions Conferences and PAAC-led events in recent years, he is eager to serve as a leader within the PAAC and help guide policy for teens and adults within our community.
Home state: 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 drives a van, modified with joy stick controls. He also 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.
Hometown: Richmond Hill. Ontario
Kanch has spent his professional life working in both the public and private sectors, while maintaining a focus on raising disability awareness within each sector and in the community at large. His professional and volunteer roles have included the Bank of Montreal Diversity Council, Access-York University, Able-York, and the Centre for Independent Living in Toronto. Kanch has a political science degree from York University in Toronto.
Kanch has been married for 13 years and has 3 children. In 2013, he had a tracheotomy performed, and uses a ventilator at night.
Kanch and his family has been impactful contributors to PPMD’s community through his involvement on the PAAC. Attending conferences, leading Transitions meetings, and shaping policy initiatives, he has infused his knowledge and experience of living with Becker’s into the legislative and policy initiatives of PPMD.
Hometown: Kalamazoo, MI
Colin has an extensive background in advocacy and service, having contributed extensively to his college, church, and local communities for many years. An Andrew W. Mellon scholar at Hope College, Colin graduated with degrees in both music and history and numerous noteworthy accomplishments as a musician throughout his college career. As a member of PPMD’s Adult Advisory Committee, Colin has helped to shape federal policy, co-led PPMD’s national transitions conference, and participated in federal advocacy efforts on Capitol Hill. When asked about his experiences with the PAAC over the last year he reflected, “we all come to the table having experienced life with Duchenne or Becker, and it is awesome to be able to work together to tackle this disease”.
Home state: Farmville, Virginia
Colin graduated from community college in May of 2015 and works as an IT Specialist for Letterpress Communications. He also dedicates time volunteering as an assistant superintendent for a local model railroad club.
Colin joined the PAAC in 2016 after having been involved with PPMD since he was first diagnosed with Duchenne in 1998. While his family has been involved in all levels of the community and organization, being a part of the PAAC allowed Colin to advocate as an adult within our community. He has spoken at Every Single One tour venues, participated in PAAC-led meetings, advocate on Capitol Hill, and now is working with an industry partner to integrate the perspective of the adult community in their drug develop and access program considerations.