National Community Advisory Committee
The National Community Advisory Committee (NCAC) is a 15-member group that will advise MDA on matters of importance to families living with neuromuscular diseases and help inform MDA’s efforts to support individuals to live unlimited.
At MDA, families are at the heart of everything we do, and the NCAC will help us better connect to, empower and serve our community.
The committee’s preliminary goals include:
- Serving as a focus group, sounding board and committee of subject-matter experts for MDA, providing a deep understanding of the current (and future) life experiences, challenges and opportunities of individuals living with neuromuscular conditions
- Creating a community of peer support and resource-sharing that informs MDA of timely issues and events for the neuromuscular community
- Representing the diversity of opinions and ideas within the neuromuscular community and sharing feedback so MDA can best support community needs.
Our 2017 committee comprises individuals with neuromuscular disease, siblings, parents and spouses. Each individual completed a rigorous application process. Up to one-third of the committee will be rotated every year to provide opportunities for other members of the MDA community to participate. The committee will meet once a year in person and participate in quarterly conference calls.
Meet the 2017 NCAC Members:
Pearl is a loving mom and San Diego State University student. She has a B.S. in psychology and aspires to attain a master’s degree in rehabilitation counseling so she can serve the uniquely abled community by empowering their dreams. She is living with limb-girdle muscular dystrophy and is a newer wheelchair user and says she’s “Lovin' it!".
Amy works with the Neuromuscular Disease Foundation, raising awareness and support for GNE myopathy, a form of distal myopathy. A retired special education teacher, she advocates for special education students. She is a proud supporter of and volunteer with MDA.
Stephanie is a substitute para-educator. She is the mother of an 8-year-old daughter with type 2 spinal muscular atrophy (SMA type 2) and a 5-year-old son who is unaffected. She is a current volunteer with her local MDA office, gala committee member and works to advocate for equal access for children with disabilities in her community. She also is a member of the PTA and a Girl Scout troop co-leader.
Deceena Gaines, LPN, ATS, CCRC
Deceena is a clinical research nurse and certified clinical research coordinator at Dayton Children’s Hospital. She says, “I am committed to providing the highest quality care and data to the children, families and medical researchers in my community.” Deceena, who has limb-girdle muscular dystrophy 2A (LGMD2A), is a mother of four young children and is seeking answers for one of her children with undiagnosed muscle weakness. She is the wife of an amazingly supportive husband named Randy. Deceena is also a student pursuing her bachelor’s degree in applied and technical studies.
Michael is a managing partner of The Agency — Venice, a global real estate marketing and sales organization. His older brother, who was affected by Duchenne muscular dystrophy, passed away at the age of 39 in December 2016. As a sibling of someone with a neuromuscular disease, Michael has seen firsthand the capabilities of these individuals and their ability to contribute to society, as well as the ongoing care needed and family involvement.
Leslie Krongold, Ed.D.
Leslie, who has myotonic dystrophy, is host and creator of the Glass Half Full podcast, which explores positive ways to cope with a chronic health condition. As a teenager in the late 1970s, she was an MDA Summer Camp counselor in Florida and a youth chairman for Dade County. She has served as an MDA support group facilitator for 17 years in Northern California.
Anna is living with type 2 spinal muscular atrophy (SMA type 2). She serves as MDA’s New Jersey State Ambassador and has previously attended MDA Summer Camp. She participates in competitive speech & debate and is an intern with a political campaign.
Doug is a Supply Chain Senior Manager for Johnson & Johnson. He received a Bachelor of Science and Master of Science in Dairy Science from Virginia Tech and the University of Florida, respectively, as well as an M.B.A. from Duke University. Doug, who has type 3 spinal muscular atrophy (SMA type 3), is active in adaptive sports, recreation and travel programs. He has volunteered with local MDA offices in Wisconsin, North Carolina and New Jersey. For the last several years, Doug has been doing public speaking on disability and inclusion, and he’s been active in starting an employee disability group at Johnson & Johnson.
Jason, who has Becker muscular dystrophy, was elected Washtenaw County Commissioner, representing nearly 40,000 residents. He has a bachelor’s degree in political science from Northern Michigan University. Jason has dedicated his life to public service, serving as staff to several members of Congress, the Michigan State Senate and as Director of Government and Community Relations for Washtenaw Community College. He also has been engaged in the community as a volunteer on many nonprofit and community boards and committees. He has been an active volunteer with MDA for nearly a decade and serves on several local nonprofit and community boards.
Chris, who has limb-girdle muscular dystrophy, is a senior software engineer at Microsoft. This SharePoint developer is using his skills to help make products better for people of all abilities. Chris serves as an advisory board member for DO-IT (Disabilities, Opportunities, Internetworking and Technology), an organization dedicated to empowering individuals with disabilities through technology and education. He also was a former student advisory council member for the U.S. Business Leadership Network (USBLN).
Catherine, who has ALS, is retired due to disability. She has a project management background, and she’s a dedicated and passionate advocate for the ALS community, as well as, the larger neuromuscular community. She is committed to living a meaningful and fulfilling life despite physical limitations and is doing all she can to help others do the same.
Aparna has a son living with Duchenne muscular dystrophy. As a caregiver and someone who works in the pharmaceutical industry, Aparna brings a unique perspective as a patient advocate and a staunch advocate for rigorous clinical research. She is a strong proponent of patient-driven clinical trials, especially in the rare disease landscape. Aparna also hopes to serve the community by empowering youth toward greater self-advocacy.
Delroy, who has Charcot-Marie-Tooth disease (CMT), is a public school teacher and author. He has a B.A. in social science and history and an M.S. in counseling studies. He also is the recipient of a college award for exceptional achievement. He was named Rehabilitant of the Year by the local Division of Vocational Rehabilitation. Delroy has a long track record in education, volunteering and caring for others. He has extensive experience on both the giving and receiving ends of disability services. He says, “I believe those of us facing barriers are some of the strongest people alive and the best motivators around!”
Ralph, who has limb-girdle muscular dystrophy (LGMD2L), is a former regional vice president for AARP and is currently a licensed clinical counselor. He worked his entire career in the nonprofit arena in mental health and aging, and he led major advocacy efforts in Illinois. Ralph also helped start a cancer foundation in Florida that provides bilingual assistance (English and Spanish).
Tracey Young, RN, BSN, JD
Tracey is living with myasthenia gravis, and she coordinates a myasthenia gravis support group in southeast Texas, which also serves families in southwest Louisiana. She has a law degree, which she puts to work while reviewing charts and inspecting our hospital’s facilities to ensure it is in compliance with all governmental and professional standards. She also has a background as a cardiovascular intensive care nurse, and she spent a couple years as a post-anesthesia care unit nurse. She says, “I have a strong compassion for people and mostly for doing the right thing by them simply because it's the right thing to do!”