MDA Ambassador

MDA Ambassador Program

MDA Ambassadors are individuals living with neuromuscular disease who share their stories and authentic perspective to connect within the community to raise awareness, inspire support, and advance the MDA mission. Ambassadors share their story and experiences in a variety of formats and engage with MDA’s partners and the greater community to spread awareness and garner support.

Ambassadors should be passionate about MDA’s mission, committed to making a positive difference, knowledgeable about MDA’s programs, and able to articulate MDA’s impact on the neuromuscular community. We strongly encourage families and individuals to be engaged with MDA before applying to be an ambassador. Ambassador responsibilities are tailored to the interests and strengths of each individual.

Responsibilities can include:

• Public speaking, virtually or in person
• Recording videos
• Engaging with MDA sponsors
• Engaging with and amplifying MDA’s social media platforms
• Writing blogs
• Attending events
• Writing thank you letters
• Participating in media interviews
• Creating artwork

Apply to be an MDA Ambassador today!

This role is open to youth and adults living with neuromuscular disease. The Ambassadors application is for a year-long, renewable term.

Apply Now

Questions? Contact MDACommunityPrograms@mdausa.org or 800-572-1717.

Meet Lily

Living with a neuromuscular disease has profoundly shaped my perspective on life. It influences how I navigate the world, interact with others, and advocate for myself and the broader community.

I often reflect on the bittersweet nature of my experiences. While neuromuscular disease has presented significant challenges, it has also brought immense joy, community, and personal growth. The Muscular Dystrophy Association has played a pivotal role in my journey, providing invaluable support, resources, and a platform to share my story.

My hope is to inspire others to embrace a positive outlook, even in the face of adversity. By finding strength, resilience, and determination, we can overcome challenges and live life to the fullest. I encourage individuals to advocate for themselves and others, and make a meaningful impact on the world.

Follow Lily’s ambassador journey on our blog.

Meet Ira

In 39 years of life, I’ve traveled, met extraordinary individuals, seen over 20 live operas, and have been the recipient of great advice. I’ve witnessed generosity, discovered a love of seafood, become a sports aficionado, and gained a healthy sense of humor. 39 years of life has brought me to the place that I needed to be, the place where I clearly know who I am and what is most important…and that is love! My life began in St. Louis, MO. I was born with Spinal Muscular Atrophy and a big personality. In my adolescence, my strong interest in performing arts culture led me to participate in school band as a clarinetist and percussionist. My fascination with understanding the depth of human emotion led me to major in Psychology at the University of Missouri. My strong sense of curiosity has propelled me to put over 100k miles on my modified van through my exploration of this beautiful nation.

A desire to have independence, be a value add in society and need to consistently evolve has led me to a successful career in healthcare in corporate America.

Living a life with SMA can sometimes be a winding road, but I’ve been blessed by the presence and guidance of a plethora of amazing individuals who have continuously pushed and motivated me to not life live with a mindset that focuses on the challenges that I face. These individuals help encourage me to consistently see the challenges and obstacles in my life only as opportunities to adapt and overcome. They urged me to always hold a can-do mentality and to see the gold in my life. These individuals demonstrated, reciprocated, and extended love.

As a south Floridian, I have a mission focused on enjoying the very best of life during the next years of my life. I will allow the examples of humility, courage, and selflessness that I see daily in the heroes in my life and community be the remedy that I need to be the man, supportive figure, and leader that I pledge to be for the environments and societies that will be along the path.

Follow Ira’s ambassador journey on our blog.

Meet Gabrielle

Life with a neuromuscular disease has its share of ups and downs but it’s a journey I wouldn’t trade for the world. I was diagnosed with spinal muscular atrophy type 2 (SMA) when I was just a year old, and from that moment, my life changed forever. When I was diagnosed, the neurologist told my parents that I might not live past the age of two; and suggested they take me home, keep me comfortable, or maybe even take me to Disney World, “because that’s what they do for sick kids.”

So, my family and I decided to turn that statement into something empowering — we’ve gone to Disney World every single year since then as our way of saying, “We’re still here, and we’re still celebrating life.”

Now, at 23 years old, I can proudly say that I’ve far surpassed every expectation that was set for me. The lessons this disease has taught me are invaluable: resilience, gratitude, and the importance of living each day to the fullest. I’ve even gone skydiving, because I never want fear or doubt to stop me from experiencing everything life has to offer.

This journey has also taught me to be an advocate, for myself and for others. In high school, I helped organize my school’s first Disability Awareness Week, and that experience lit a spark in me. I carried that passion into college, where I became a proud member of Alpha Kappa Alpha Sorority, Incorporated, helped found an organization dedicated to advocacy and community for disabled students, and was one of five seniors profiled in my graduating class. I earned my B.A. in Psychology with a minor in Music, and I’m now pursuing my M.S. in Counseling with a concentration in Clinical Mental Health at the illustrious Tennessee State University. My dream is to one day open my own clinic to support underrepresented minorities in the mental health field.

Throughout all of this, MDA has been a constant source of support and encouragement. From MDA Care Centers to Summer Camp, their impact on my life has been profound. I’ve attended MDA Care Centers since I was a little girl, where I received not just medical care, but also resources and hope. MDA Summer Camp gave me confidence, community, and unforgettable experiences, like zip lining for the first time! It was the first place I truly felt surrounded by people who understood me.

MDA has been with my family and me through every stage of this journey, helping us navigate the unknowns of SMA. They’ve become more than an organization, they’re family. I wouldn’t be the tenacious, joyful, and hopeful person I am today without their support, and I’m proud to represent MDA as an ambassador, sharing my story to remind others that strength, courage, and joy can flourish even in the face of life’s biggest challenges.

Meet Sophia

I don’t remember life before being diagnosed with juvenile dermatomyositis (JDM) at the age of two. Growing up with a rare disease, I often felt out of place being different from my classmates. I was very shy and found it difficult to voice my needs. However, attending MDA Summer Camp was a catalyst for change in myself. I remember feeling nervous as the youngest camper who just graduated from Kindergarten. But each summer at camp, surrounded by relatable peers who lived with neuromuscular disease like me, allowed my confidence to soar. I also learned the importance of belonging and community. From being a Shamrocks ambassador to advocating on Capitol Hill, I strive to give back and make a positive impact.

Currently a high school senior, I look forward to continuing my journey of discovery and learning in college. Although many academic areas capture my curiosity, I’m particularly interested in chemistry, neuroscience, public policy, and global health. I wish to carry forward perspectives from lived experiences and use my education to create change in the world. I’d love to be part of efforts making advances in accessible, effective healthcare; rare disease research; and technological innovations that will improve people’s lives. I’m fascinated by the brain and yearn to learn more about what makes each of us unique. As an active member of my school’s Medical Society and Medical Humanities Magazine, I work to spread awareness of neuromuscular diseases and encourage others to explore the health sciences. In my free time, I can be found diligently crafting new jewelry or creating digital art for my Etsy shop. Occasionally, you may even see me dressed up as your favorite anime, book, or TV character in the mall (I’ve been cosplaying for over 6 years)!

Spreading awareness about neuromuscular and rare diseases is my passion. JDM is a part of who I am, but it doesn’t define me. It’s not a weakness. Instead, I’ve grown to believe that it empowers and makes me unique. I hope to use my voice to educate, inspire, and make a difference for the MDA community.

Meet Jeff

Meet Jimmy

I was diagnosed with muscular dystrophy when I was 7 years old. While I slowly lost strength in my arms and legs and now use a wheelchair, I believe my condition has shaped me in many positive ways. It pushed me to become more outgoing, resilient, and creative in finding ways to pursue the things I love, such as theatre, where I became the first student in my high school to compete at the state level four years in a row.

In 2025, I graduated from the University of Notre Dame with a degree in Management Consulting. During my time there, I was honored to receive awards for leadership, communication, and spirit. I also made history as the first wheelchair-using campus tour guide and one of the first disabled Resident Assistants. These roles allowed me to mentor students and break down barriers on campus.

The Muscular Dystrophy Association has been a constant part of my journey. MDA Summer Camp gave me lifelong friends, unforgettable memories, and a sense of belonging. Those experiences inspired me to lead a team for Tampa’s MDA Walk, where we raised top donations and rallied our community. I also had the privilege of serving as an MDA Ambassador for Florida, sharing my story at events and seeing the impact MDA has on so many lives.

Travel is one of my greatest passions and I’ve been to more than 40 countries! This has fueled my dream of making the travel industry more accessible. I want others with disabilities to experience the beauty of the world without unnecessary barriers. By using my voice, I hope to encourage others to embrace who they are, step out of their comfort zones, and create ripples of positive change in their communities.

Meet Tasha

At first, myasthenia gravis had a deeply emotional and psychological impact on my life. The stress of losing control over my facial muscles and the inability to swallow was mentally draining. Since my diagnosis in 2011, I’ve worked diligently to manage my stress levels. Over the years, I’ve learned to identify what triggers flare-ups and how to protect myself from heat.

The impact MDA has had on my life has been truly profound. I’ve greatly benefited from their resources, including access to top specialists, care centers, and educational materials. They have helped me understand my condition better, stay informed about the latest research and treatments, and learn practical tips for daily living.

I am an accomplished Manager of Strategic Sourcing with over 15 years of business experience, and I enjoy traveling, spending time with loved ones, and cooking. By sharing my story, I aim to inspire others facing similar challenges to stay positive, seek out support, and never give up on their goals and dreams. Ultimately, my goal is to highlight that, with the right support and determination, it is possible to lead a fulfilling and meaningful life despite the obstacles. Together, we can make a difference and improve the lives of those affected by neuromuscular diseases.

Meet Elizabeth

Hi, I’m Elizabeth! I’m in middle school 6th grade to be exact!! I love animals, especially my golden retriever, Piper. She’s my best friend and is always right by my side. I also love hanging out with my friends, going on family trips, and just being me! Oh, and my friends think I’m a little strange because I actually love math—it’s basically just life’s puzzles, and I can’t resist a good puzzle.

I live with generalized myasthenia gravis, which means my muscles get weak and tired really fast. Somedays are hard, but I don’t let that stop me from doing the things I love. I’ve learned how to adjust and make life accommodate me instead of the other way around. Along the way, I’ve found my voice and started speaking up—not just for myself, but also by talking to medical students and doctors about what it’s like to live with a rare disease and how much they can learn from their patients. Someday, I want to be a neuromuscular doctor so kids like me can get the right answers sooner. My doctor, Dr. Fay, is one of the smartest doctors and kindest humans I’ve ever met. No one will ever be as amazing as him, and I hope I can be like him one day.

MDA has been such a big part of my life. MDA Summer Camp is one of my favorite weeks of the year, and the research MDA supports has made a huge difference for kids like me. Because of MDA, I can still go to school, take vacations, spend time with friends, and just be a kid.

Being an ambassador means I get to share my story, raise awareness and show that kids with neuromuscular disease can still dream big, do big things, and have lots of fun along the way. I want my story to show that neuromuscular disease isn’t defined by limits. I define myself—and I will always keep dreaming big, loving deeply, and living fully.

Meet Daniel

Where does one even begin when trying to describe this incredible little boy? Daniel (“Danny”) is curious, adventurous and full of energy. Playing with cars, creating art, or following his big brother are just a few of his favorite things. A baseball loving 6-year-old, who just finished his second season of t-ball, can’t wait for his next chance at the sport. He can name every car on the road, is obsessed with his stuffed bunny and has the sweetest soul.

Danny was diagnosed with Duchenne muscular dystrophy in March of 2022. His family immediately jumped into action and started advocating for his needs. The care from their local hospital has been a tremendous blessing. The doctors, caseworkers, specialists and nurses have supported them since day one and they are so grateful. Danny was honored to be the first child in the area to receive Elevydis in November of 2023. He has been so fortunate to have good results, and the family continues to hope for the same outcome for others. Danny recently started Duvyzat as well. Science is so awesome!

Katie, Danny’s mom, wants to help others know that they are not alone in this journey. The diagnosis for this disease is devastating and she wants to help other parents have a platform where they can grieve and celebrate together. Spreading awareness is so important for Katie. Getting Danny’s story out, for others to understand, can be lifechanging.

Danny’s family also wants to share that “you are a superhero”. The love and support Danny has received from family, friends and strangers has been inspiring. Danny is the strongest boy, and he is constantly told that he is “our superhero”; so are you for being a part of this journey.

Meet Zach

Some of life’s biggest lessons come from the challenges we never asked for.

Growing up with muscular dystrophy came with its own set of challenges, but MDA was there every step of the way. From the independence and inclusion I felt at Summer Camp, to the sense of community at events like Fill the Boot, MDA helped me feel supported and understood.

As I got older, I had the opportunity to share my story and speak about the power of positive thinking—how even in the middle of hard moments, shifting our focus can help us find joy.

Recently, at 28, I suffered a femur fracture that led to an ICU stay. It was during this time of reflection that my passion for the MDA community reignited in a new way—not just as a participant, but as an advocate. I’m committed to raising awareness about neuromuscular disease, especially in healthcare, and to highlighting the impact it can have on mental health.

My goal as an MDA Ambassador is to be part of the change, working with others to create a more inclusive, positive, and understanding world.

Meet Amanda

Meet Sory

Neuromuscular disease has had a profound impact on my life. I was diagnosed with spinal muscular atrophy at the age of 3. At first, the journey felt uncertain for both me and my family. I faced physical and emotional challenges, adapting to a life with limitations and unique needs. However, as the years have passed, I have embraced the disease and consider myself truly blessed to be alive today.

In October 2025, I will turn 38, a monumental milestone that can only be a miracle. My journey has been one of resilience and determination, from returning to school to earn two college degrees to even going indoor skydiving, embracing life fearlessly along the way. In the spring of 2020, I decided to return to school to earn my associate's degree. It was a challenging journey, but I achieved that goal. I continued my education, and in April 2023, I proudly received my bachelor's degree in Mass Communication, graduating summa cum laude.

I continue to pursue my passion for education and communication. Beyond my academic pursuits, I am passionate about sharing my story of living with a neuromuscular disease. As a public speaker, I have had the privilege of inspiring others with my experiences, using my voice to shed light on the challenges and triumphs of living with spinal muscular atrophy. I am driven by the opportunity to connect with people and offer insight into the resilience and strength it takes to overcome life's obstacles.

My connection with MDA extends beyond the practical support they've provided. As a child, I had the privilege of being involved with many MDA events and programs, from participating in the annual MDA Telethon at my local news station to joining the MDA Lock-Ups. These experiences profoundly impacted my life and played a pivotal role in shaping the person I am today. They provided me with invaluable opportunities to develop my speaking skills and connect with people, sharing my story with others and gaining a profound sense of empathy and understanding. One of the most cherished aspects of my association with MDA was the opportunity to attend MDA Summer Camp for 17 years. These summer camps were a highlight of my youth, providing a space where I felt truly understood and accepted. My involvement with MDA has cultivated a deep passion for its mission, and I am immensely grateful for the major role the organization has played in my life.

I hope to serve as a living example that obstacles can be transformed into opportunities for growth and self-discovery. My experiences have shown me the power of perseverance and the importance of staying focused on our dreams and goals, even in the midst of adversity.

Meet Mike

At 55 now, it has been almost 25 years that I’ve been living with muscular dystrophy. In 2016, a genetic test revealed it to be the anoctamin 5 (ANO5) mutation, limb-girdle muscular dystrophy 2L/ R12. In younger years, I was very active, playing basketball in high school and college and becoming an avid cyclist in my 20s. In my early 30s, I noticed that I couldn’t climb hills on my bike as before. My hamstrings and lower quadriceps are the most affected. Today, I have no strength in them.

I never felt defined by my disease. I have a great career, working in the pharmaceutical industry. I love to cook. I am able to visit amazing places all over the world on vacation. I’m fortunate to have a wonderful family, with my wife and daughter. My brother has the same disease, and he is a year younger. We talk for hours about the struggles. Not many are fortunate to have someone else close who also know about the daily struggles. Most people, of course, have no clue.

For a long time, I was able to operate without others knowing. Occasionally, I’d get comments like: “did you hurt your knee”, or “are you limping”, which I could easily brush off. With genetic testing now giving us diagnoses earlier than ever before, more and more people discover they have muscular dystrophy without having symptoms or with only mild symptoms. We are a diverse community. I draw strength hearing from everyone going through the struggles brought by limitations on physical function.

I am grateful to the MDA and all who are part of the wider neuro-muscular community, including caregivers, unaffected family members, and other allies. None of us asked for the hand we were dealt, but together we can play our cards in a way that will let us live life well. My message to others is to adapt, adopt a growth mindset, get help, love yourself and others, and revel in community. Lean into what you love to do. Confront challenges and share your resilience, courage, and accomplishments.

Meet Celine

I'm Celine and I was born with merosin-deficient congenital muscular dystrophy (LAMA2). As a child with a disability, I have been an advocate for my self ever since I can remember. I love speaking up about inclusion and raising awareness about equality for everyone.

One of my goals is to promote better media representation of all physical disabilities. I love theater and dressing up as different characters, I also love writing stories, reading, music, movies and playing video games.

MDA has given me a sense of community and allowed me to meet other kids like me. It has also given me the opportunity to advocate and speak out about what matters to me most, living with a physical disability.