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 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.
The members of the NCAC have drafted personal statements to introduce themselves to the MDA community. Please read on below to learn more about them.
My name is Bettemarie Bond. I have a mitochondrial disorder, a progressive neuromuscular condition and form of muscular dystrophy. Because Mitochondria are found in almost every cell, this disease affects many different organ systems and functionalities. When mitochondria, otherwise known as the “powerhouse of the cell”, do not produce enough energy, organs do not properly function. As a result, some aspects of my body run on limited energy, not fully functioning. For example, when I sit up, energy goes to my muscles, instead of to my brain, affecting my ability to think and talk.
Because of my disorder, I receive 3 to 4 different IV infusions each day directly into my heart via catheter, giving me a nutritional substitute for food. My blood sugar drops very low and dextrose must be unfused around the clock to keep my blood sugar at a safe level. Saline is infused daily to help stabilize my blood pressure and heart rate. Most of these treatments are not covered under regular Medicare.
After 20 years, there are still no treatments or medications available. As a result, I advocate for research, improved healthcare, and coverage of the therapies I need.
I, Pearl Burgin, am a San Diego native, a mother and graduate student pursuing a master’s degree in rehabilitation counseling. Eighteen years ago, I was diagnosed with limb-girdle muscular dystrophy type 2A (LGMD2A) after four years of arduous examination. Since my immersion into disability, I have learned hard lessons navigating "assistive" systems and programs. I have experienced misinformation, long waits and unnecessary bureaucracy. I have also witnessed the struggle, frustration, and discrimination that comes with living with a disability.
The U.S. may have progressed from where it started regarding disability issues, but further advancements are vital. I have lost many friends before their 30s due to muscular dystrophy. I mourn them and grieve because these horrible conditions force an early grave. I’m fed up seeing people beg to obtain quality of life, battling to maintain breathing and fighting to live. Thus, I became an MDA advocate.
My name is Amy Curran and I have GNE myopathy, an adult onset rare neuromuscular disease, which led to my early retirement on disability from work as a special education teacher. Without my career path, I felt lost, until I realized that my situation is not unique. I decided to utilize my free time to connect with others who share similar experiences and advocate for all with disabilities. In sharing my experiences, I have discovered that the community of people with disabilities is full of people with similar needs and issues that must be addressed. Together, we can make a difference in each other’s lives and for generations to come. We must continue to remember that “community helps community.”
I’m Nikki Diaz, a 50-year-old woman with spinal muscular atrophy (SMA). I come from a family of strong, independent women who thrive on living life to the fullest. I’ve learned that being disabled means finding my special way to do life, giving me the right attitude to be a living example of inclusion. I enjoy working with underprivileged children, writing, songwriting, modeling, and advocacy. I’m passionate about helping my world see me first as a human, before seeing the disability. I advocate for MDA because policy creates social and economic pathways that enable disabled people to be functioning members of society and not a special focus. It’s been my duty to share with this world just how human I really am, and it’s rewarding to observe how easily barriers are dissolved when people see my abilities. This is my purpose.
My name is Melissa Grove and I am the executive director of Legacy Counseling Center in Dallas, Texas. I was 18 when I was diagnosed with limb-girdle muscular dystrophy (LGMD) and for 33 years there has been no treatment or cure for my disease. I have gone from mountain climbing and backpacking in Europe to being unable to stand. My disease has progressed slowly but now impacts my life primarily through heart failure, restrictive lung disease and, of course, the inability to walk. This year there will be three gene studies for my disease that could reverse or cure my issues, which is the first legitimate hope I have ever had. These are truly exciting times. I advocate because we have never been closer to a cure. Through my work every year, I help thousands of people and I still have so much to accomplish.
As someone with adult-onset myotonic dystrophy (DM), I feel fortunate to have led a normal life until my mid-30s. My sister, born with congenital DM, had a brief life and I’ve now outlived my mother as well. These experiences have shaped me to savor each moment, learn what I can to enhance my quality of life, and share my knowledge with others.
Ironically, long before my mother was diagnosed and the premature death of my sister had an explanation, I spent my teenage years volunteering as an MDA Summer Camp counselor and organizing dance marathons for fundraising. Once I was diagnosed, I joined an MDA support group and within a few months was asked to be the group’s facilitator. My 17-plus years of support group involvement have taught me courage, humility and compassion. As an MDA advocate, I love helping others who struggle with the physical and emotional challenges of living with a neuromuscular disease.
My name is Doug McCullough and I have spinal muscular atrophy (SMA) type III. My SMA was relatively mild — I was even MVP of my youth basketball league. However, when I was 11, I started seeing doctors as I was the slowest runner in class and something didn’t seem right. My body has continually gotten weaker, and though I am still ambulatory and living independently, moving has gotten tougher. Last year I had 41 falls, and over the years, I have broken bones and needed lots of ice packs. Fortunately, I have a good mind and have built a career in supply chain at Johnson & Johnson after getting my MBA from Duke University. I never thought of myself as “disabled” but have learned that people simply don’t understand the disability perspective. Thus, I helped develop J&J’s disabled employee group and have become in demand across J&J, sharing my perspectives on disability and inclusion.
My name is Jason Morgan and I have Becker muscular dystrophy (BMD). I live in Ann Arbor, Michigan, where I serve as chairman of the Washtenaw County Board of Commissioners, a unit of local government responsible for providing essential human services in our community.
At age 13 I was diagnosed with BMD, which primarily impacts the arms, legs, and heart. Learning about my diagnosis was hard, but I eventually realized that I had a choice to make given my diagnosis. I could choose to give up on my dreams, or I could choose to fight. I chose to fight, leading me to where I am today, helping and serving others on a daily basis.
I have been passionate about advocating for individuals and families living with muscular dystrophy for most of my life. I don’t see MD as a disability. If anything, I see it as an inspiration to live every single day as if it were your last.
When I was 8 years old, I was diagnosed with limb girdle muscular dystrophy type 2e (LGMD2E). In elementary school I began using a manual wheelchair, and by the sixth grade I had my first electric wheelchair. It was liberating to gain the freedom to move around on my own once again. Through support from my mom and her diligence in my school years, I was able to get the accommodations I needed to succeed in school. With support from vocational rehabilitation, I attended the University of Washington where I earned a Bachelor of Arts in Computer Science. I currently work at Microsoft as a software developer.
I’m passionate about accessibility and technology that enables people with disabilities to work, engage in their communities and otherwise live their lives. As someone diagnosed early in life, I’m committed to helping ensure others have opportunities like I did and can transition to successfully young adulthood.
Kristina Yancey Spencer
My name is Kristy. I am a wife, a nuclear engineer, and an avid tea drinker. I also have limb-girdle muscular dystrophy type 2I. When I was younger, each new stage of weakness could be solved with new tools. I focused on school and did internships around the country. During graduate school, my progression started restricting my independence. It was hard to accept that getting ready in the morning and transportation were my primary daily hurdles. Consequently, I am passionate about access to transportation. When I lived in Switzerland, I never had an issue because their transportation system was fully equipped for wheelchair access. It is more difficult in America, even after obtaining a fully adapted wheelchair van to drive to my new job at Los Alamos National Laboratory. I would like to see our society adopt more accessible modes of transportation to enable everyone to be more independent. Working is empowering.
I am Delroy Thompson and I live with Charcot-Marie-Tooth disease. I use a wheelchair and cannot open up my fingers. As a world history teacher to 6th graders, I was recently voted Teacher of the Year by my peers. I earned a bachelor’s degree in social science and history and a master’s in counseling studies. Born in Jamaica, I made most of my academic, career, and health advancements after migrating to the US at the age of 30. I am married and blessed with a 7-year-old daughter.
Faced with many challenges in my life, I have always lived by the personal motto, “if it’s to be, it’s up to me!” I hope to continue to use my experiences to make the world easier to traverse by those who are challenged by similar limitations.