MDA Ambassadors

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 Devin

Being diagnosed with Duchenne muscular dystrophy my whole life has not stopped me from living life independently. I currently am going to college and majoring in communication. After school, I’d like to help a company with social media content. When I’m not studying, I like to play video games and build with Lego. I’ve been a part of the MDA community from the day I was diagnosed. I’ve been enrolled in two clinical studies which the MDA donors have helped make possible.

One of my favorite parts about being an ambassador is hanging out with the fire fighters at fill the boot. They are a huge part in raising money to help with research and help send kids to camp. MDA Summer Camp is one of the best weeks of the year, where kids living with muscular dystrophy can go and meet other kids just like them. They get to do activities that they would not normally do. Parents also get a break and enjoy their life. Camp has helped me develop many new friends that I would not have had before.

MDA has meant being able to live life independently without boundaries.

Meet Doug

Receiving the diagnosis of ALS was hard. Knowing there is no cure and death usually occurs within 2-5 years is not what most people want to hear. I was diagnosed on April 8, 2014 and I’ve been fortunate. I am in the 5-10% who live 10 years or longer. Looking back, we know that I had the disease at least a year prior to the diagnosis. That said, the years living with ALS have been the best years of my life. I have always been a positive guy, looking for the good and not the bad, but I recognize that many others don’t have that type of outlook.

I was fortunate to attend my first MDA/ALS Clinic when I did because MDA taught me that there were many ways to live life with ALS. When I was diagnosed, I made a commitment that I would do anything and everything in my power to help raise awareness and to find a cure. I have chosen to advocate, inform, encourage and be a resource to those affected by ALS. However, walking with other families through the course of this disease can be hard, very hard at times. Seeing someone dying in front of their family and their family wanting to do anything they can to keep their loved one with them is incredibly difficult.

Living with ALS drives me in every area of my life. My relationships with God, my wife, our kids, and family and friends mean more to me than I could have ever expected. These relationships are closer and deeper than ever before. Living with ALS has also allowed us so many experiences. Those experiences are important, but they still are just “things” in the grand scheme of life. The most important things I’ve ever done are spending time with my family and other families living with ALS. I created a creed and tagline of “Love Life, Live Life” and that is what I choose to do. To say that my life revolves around ALS would be an understatement. That is what God has me doing and I wouldn’t want it any other way.

Meet BB

Hello! My name is BB, I am a 10th grader, and I have a rare form of muscular dystrophy called Dejerine-Sottas, a type of Charcot-Marie-Tooth disease (CMT3). Despite using a wheelchair, walker, or AFOs, I do not see myself as less capable than others. I believe I possess a unique superpower: the ability to achieve anything I set my mind to. This mindset was instilled in me by my wonderful family.

In my free time I enjoy drawing. Art allows me to transform both negative and positive emotions into something beautiful. I also have a passion for fashion, shopping, and spending time with my cousins and siblings. I also find great joy in attending therapy sessions. My OT and PT are incredible; they push my, support me, and provide comfort.

I value the time I spend with my family, as they continually support, encourage, love, and teach me. They make me feel “normal,” and through my experiences, I have come to understand that I am indeed normal because I, like everyone else, experience life mentally, emotionally, and physically.

I have always aspired to be a public figure who makes a positive difference in society. To this end, I have started a YouTube channel documenting my journey with CMT, and I have a website as well. After graduating high school, I plan to attend college to study criminal justice. My ultimate goal is to open my own law firm to advocate for the rights and needs of individuals living with disabilities and to make it easier for them to navigate a world that often overlooks our interests.

Meet Will

Will is adventurous, full of life and curiosity. He loves to learn and talks endlessly about ABC’s and 123’s. His favorite role in life so far is being a big brother to “Baby Paul.” He also loves to spend time in the pool!

Will’s family learned that he had arthrogryposis in-utero, which they later discovered through genetic testing, is a symptom of SMA-LED2. His family advocates strongly for genetic testing and says it has given them so much clarity. Will has had lower extremity castings, surgeries, and countless PT appointments all starting at 2 weeks of age. Will’s mom shares that although sometimes their journey has been daunting and stressful, his diagnosis has impacted her view of the world in a positive way. She says that despite everything Will has been through, he remains full of light – which for her, is a testimony that they can do anything.

Will’s parents also want to share that “we are all in this together. Whether you’re thinking about your family members, friends, MDA, or your team of doctors. Most people are good and want to be there in whatever capacity they can. In the meantime, as Will says in those tough moments, don’t forget to tell yourself ‘I am tough! I am strong! I CAN DO IT!’”

Meet Justin

My name is Justin, I’m 30, and I’ve been married to my falcon flame (college sweetheart), Alexis, for nearly five years. We have a two-year-old son, Tatum, and a dog named Kobe. Currently, I am a manager of operations excellence for a landscaping company. I’m big into sports, primarily basketball and football. I enjoy quality time with family and friends, along with playing a variety of board games. I was diagnosed with muscular dystrophy when I was thirteen years old. Years later, after more in-depth testing, I learned that I was living with limb-girdle muscular dystrophy 2B.

When initially processing this condition, I experienced a lot of mixed emotions. I remember feeling lost because I knew little about it and the severity of the condition. I remember being frustrated because my physical outlook was changing without my approval. I recall having to navigate differently from my peers because of my newfound limitations. Since that time of uncertainty, I have gained invaluable firsthand experience navigating the complexities of this condition. Through my journey, I have encountered both the challenges and the triumphs that come with muscular dystrophy, and I am passionate about leveraging my insights to support youth and society. I firmly believe that by sharing our personal stories and experiences, we can foster greater understanding, empathy, and support within the community. I want to help support others who may be feeling what I was feeling when I first received my diagnosis.

I want to make a difference in the neuromuscular community by sharing my story to raise awareness, and by providing support and guidance to individuals and families impacted by muscular dystrophy. Earlier this year I was the keynote speaker at an event in Nashville, TN where I discussed inclusion in the workplace. I am committed to making a positive difference. I choose to not let this define me as a person, but to motivate me to be the best version of me. I hope to encourage others to be the best versions of themselves too.

Meet Nora

I graduated from Columbia College with bachelor degrees in Psychology and Sociology, with an emphasis on Crime and Social Inequality. However, having so many obstacles and limitations in some areas of my life has given me the drive to never stop learning and growing in the areas I do have control over. Throughout my life I have also taken classes in paralegal, art, and the biomedical field.

Aside from learning, volunteering is another passion of mine. I have volunteered in my community since the age of 16 years old. From being a youth mentor, to helping organizing fundraising events for local foster care agencies, and even volunteering in online support groups.

I support MDA because of how it has helped me, my family, and others. I have Selenon SEPN1 myopathy, and so did my two older brothers (Javier and Eduardo) and one of my older sisters (Patty). They have unfortunately passed away due to this disease at the ages of 16, 17, and 37, but my memories of them encourages me even further to advocate for myself and others, and to help anyone in need.

My condition has taken me on a path that I’ve had no choice in being on, but I have discovered that although I am not able to change the general path my condition has taken me through, I have been able to at least mold it in a way that lets me feel like a human being, like myself, and reminds me how enjoyable life can be despite my difficulties and differences.

Meet Tamara

I’m Tamara, a dedicated advocate, wife, proud mother of three, and an active participant in my community. Alongside running a thriving home daycare, I serve in various ministries as a teacher, singer, and youth leader. In July, I was honored to become the First Lady of my Church, where I continue to serve in faith-based leadership. This year, I also have the privilege of holding the title of Ms. Wheelchair America 2025.

At 27, my life took a significant turn when I was diagnosed with limb-girdle muscular dystrophy after years of uncertainty about my declining motor skills. While the diagnosis initially presented challenges, I found strength through faith, empowering me to embrace my identity and abilities with confidence.

My passion for advocacy and change has driven me to raise awareness about muscular dystrophy, disability rights, and life in a wheelchair through social media and community outreach. I’m now expanding my efforts through my newly founded non-profit and writing books that inspire children with different abilities.

As an MDA Ambassador, Ms. Wheelchair America, and First Lady, my mission is clear: to inspire the disabled community to live authentically and to encourage allies in the able-bodied community to stand with us in advocating for inclusivity and accessibility for all.

Meet Dave

I am a 55-year-old father and grandfather who has been married for 35 years to an amazing woman who is my absolute rock of a caregiver and goes above and beyond for me. I am a musician, guitar tech, and licensed massage therapist who even completed formal training with the WWE (World Wrestling Federation).

My father, aunt, and I were misdiagnosed for most of our lives. Not long ago I finally received the answers I had been searching for. A neurologist at an MDA Care Center recommended a genetic test based on my symptoms. I learned I was living with myofibrillar myopathy and spheroid myopathy.

My doctor then recommended that I join MDA, and it was honestly the best move I ever made. I had found myself falling into depression and I was isolated at home since I was unable to walk any distance without pain or dysfunction. I’m thankful for the Support Specialist at MDA who reached out and invited me to join MDA Community Groups. I was hesitant to join but so glad I did. I immediately felt supported and was even able to take my first trip out in my wheelchair shortly after the first meeting and my life has completely changed since then.

I am an advocate for better accessibility and helping people with gear/equipment choices. I consider myself a “gear nerd” and I’m constantly looking for the best products available to make living with diseases like mine tolerable. I hope to bring awareness to the need for better testing and earlier diagnoses and to the benefits of joining MDA and the amazing support that follows, especially the Community Groups as this program truly saved my life. I now have what I hope to be lifelong friends and support.

Meet Rodrigo

I am an artist who studied at the Art Institute of Dallas. Drawing and painting are my passions, but due to challenges of living with congenital muscular dystrophy I struggled to get my work seen in person. Connecting with MDA has opened many doors for me. I was invited to my first MDA Gala two years ago and donated a painting that was sold at silent auction. Since then I’ve attended the Gala every year and donated one of my works.

Although I’ve dealt with many challenges because of living with neuromuscular disease, I like to focus on what’s most important to me. My story as an artist was shared in MDA’s Quest magazine. I was recently in my first art festival and had one of my paintings featured in a gallery. I won 3rd place in the Cure CMD Art Contest and entered the Rare Artist contest from the Every Life Foundation; out of 317 entries I made it to the top 10 percent! It’s things like these that encourage me to keep moving forward despite the every-day challenges.

MDA has been a big source of hope of me. Living a more independent life and getting my artwork seen have been my biggest accomplishments so far. I want my artwork to advocate for people with disabilities and for it to tell others that things are possible when you believe in yourself.

Meet Breion

I am Breion and I am 30 years old. I am a spinal cord injury survivor from a car accident when I was four years old. At the age of six I developed a neuromuscular disease called myasthenia gravis, which is a condition that causes weakness of certain muscles. Sometimes I have weakness in one of my eyelids or in my neck, which can make it difficult for me to hold my head up.

Even though I’ve had some challenges living with a neuromuscular disease, MDA has made it much easier for me. MDA Summer Camp was a place full of peers, who I now call my friends, who were also living with neuromuscular diseases, and some even had myasthenia gravis just like me. MDA Summer Camp has impacted me in so many positive ways. I have become more confident and not ashamed of having a neuromuscular disease. I also learned so much about myself while spending a week with my friends. At camp, I learned how to ride a horse and got a first-time award, I learned how to sew, went swimming, went fishing for the first time, and got asked to dance for the first time! I recommend this camp for any young person living with a neuromuscular disease.

I am now a graduate from Delgado Community College with an associates degree in computer information technology, a social media makeup influencer (my name is Be Breezy on all social media sites), and a brand ambassador for two cosmetics companies. I am so appreciative for all the doctors, and MDA staff for making our lives better and easier. I am also thankful for my parents and sisters for being my #1 supporters in all my endeavors.

Meet James

Neuromuscular disease has had a massive impact on my life. Growing up with congenital fiber type disproportion (CFTD), I always knew I didn't quite look like or develop like peers my age. I really struggled to find my place in this world and create an identity that truly felt like me. I feel that I have had to work twice as hard as fellow able-bodied peers, but I never let that stop me. I have been able to see past my disability while ensuring I still respect it as part of me.

I am currently studying for my Masters of Social Work. Through my education and experiences, I have learned that I have an extreme passion for disability advocacy. Growing up in a rural area I never saw people like me, nor did I know of all the resources that can be available to people with disabilities. As I have learned more about advocacy and education on disability, I began to develop a passion for educating individuals with disabilities on their rights and the resources available to them.

MDA impacted my life in a multitude of ways. I grew up going to MDA Summer Camp, where I met lifelong best friends, learned how to plan for current and future goals, and gained independence. I was able to learn from past campers about where they planned to attend college, how to find an accessible university, how to find accessible driving, classes, and find other resources in my community. It was the connections I made through MDA Summer Camp and events that led me to the decision to attend the college I selected and strive for independence, ignite my passion for disability advocacy, transparency, and education.

Meet Barbara

Barbara loves spending time with her husband and adult children on their farm where they care for numerous animals. In her spare time, she reads, writes, and leads community events.

When she was diagnosed seven years ago with myotonic dystrophy, two of Barbara’s children were also diagnosed with neuromuscular disease. She is a caretaker for her daughter and very engaged with the neuromuscular disease community. Barbara is extremely passionate about patient education and making sure that people living with myotonic dystrophy have opportunities to be heard.

Barbara appreciates the community education and patient support provided by MDA. She is grateful for the opportunity to hear from experts about topics like nutrition and neuromuscular disease and more.