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 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 Leah

At the young age of 16, Leah is an accomplished actress, dancer, model and adaptive athlete. Among other things, she has danced on the Lincoln Center stage, walked in New York Fashion Week, and appeared in the Jennifer Lopez movie, Marry Me.

Born with an ultra-rare form of neuromuscular disease, Leah has faced challenges, but has learned to believe in her abilities. She’s a dedicated advocate and has gone to our nation’s capital to speak to legislators about issues important to individuals living with disabilities. Leah is incredibly excited to be serving as MDA National Ambassador. Leah shares, “It is important to advocate for yourself and to raise your voice for those who cannot, and by sharing my story I hope to raise awareness and get others to join in supporting MDA’s mission.”

Follow Leah’s ambassador journey on our blog.

Meet Lily

Living with neuromuscular disease has shaped every single part of my life, from the way I walk, to the way I interact with others, to the way I advocate for myself and others. I often say that neuromuscular disease has been the greatest blessing and greatest curse in my life; the experiences I have had, the community I have been immersed in, and the super cool opportunities that have all shaped me into the human I am today. On the other hand, the heartbreak, struggles, and pain that come along with living with neuromuscular disease have absolutely been the biggest challenges I have ever had to face.

The Muscular Dystrophy Association has had an influential effect on how I view myself as a person living with a disability. The community, patient care, and platform to share my story have been invaluable and added so much love, light, and joy into my life.

I hope to share my message of “doing it anyway” and looking for the positive sides of your personal challenges- whatever they may be. I hope to inspire people to live their lives to the fullest and to advocate for themselves and others in everything they do.

Meet Dave

I am in my late 40s and I am living with MYH7 myopathy. Even though doctors tell me I’ve had this disease my entire life, it didn’t start to become a real problem until my late 30s. I began to have issues with tripping and falling, and my grip strength became a real issue. I consider myself a very blessed man, however. I can still walk using a walking stick or cane, and I recently purchased a fat tire E-Trike that has allowed me to enjoy riding a bicycle again with my family. My doctors tell me “each day starts with a full tank of gas. You WILL run out of gas. How and when you run out depends on the choices you make.” If I make good choices, ask for help when needed, and work hard not to overdo it, I usually make it through just fine. If I try to be a tough guy and do more than I know my body should do, I pay the price and have to rest.

My wife, Anna, is my absolute rock. We committed to each other that we were in this fight against Muscular Dystrophy together, and that we would face each day with gratitude, grateful to take another step forward. Anna and I recently got a puppy to be trained as a service and mobility dog for me. I look forward to seeing how much of a help he can be in improving my quality of life! Muscular Dystrophy has its challenges, but it’s also been a huge blessing in my life. There have been some incredible friendships and an amazing support network from MDA that has developed because of it.

Ultimately, it’s forced me to rely on my faith and not my strength to get me through the tough times. Rather than focusing on the things I can’t do, I choose to be grateful for the things I have done, and the things I can do. I am so thankful to MDA for their support, resources, and networking, as well as the support and generosity of countless others who continue to help those of us battling neuromuscular disease.

Meet Carol

Carol is a professional dancer and teaches ballet to young kids almost every day of the week! She wants people with neuromuscular disease to know that “doing the things you love is possible”.

After being diagnosed with Myasthenia Gravis as a teenager, Carol struggled to find medication that worked for her and had to adjust to numerous lifestyle changes. She wasn’t always sure that she would be able to follow her dreams of becoming a dancer. Now as a young adult, Carol has found medication and medical care that works for her and lets her accomplish her goals.

Carol enjoys attending MDA webinars and learning about neuromuscular disease as well as reading the stories of other patients.

She is thriving and living life to the fullest!

Meet Mashauna

For Mashauna, helping others is “everything to her”. She is excited to spread awareness and educate others on the experience of having a neuromuscular disease. Since her diagnosis with Limb Girdle Muscular Dystrophy, Mashauna has been on a journey full of ups and downs but she feels blessed to be able to encourage others and educate the public.

Mashauna also practices her passion for helping others in her job at the YWCA where she helps run wellness centered programs for members of the community with diabetes.

She is close with her family and friends and helps them get involved with MDA events like the Muscle Walk. Seeing others support MDA “makes her heart smile”.

Meet Sydney

My life has been profoundly impacted by spinal muscular atrophy. Although I face daily challenges with my physical abilities, it has not hindered my mental capacity. Throughout each day, I rely on caregivers for my every need, yet I refuse to let my condition define who I am. I am a Business Honors and Accounting student and am very involved in organizations around campus and in the church. Although I go to college in a big city, I am a country girl at heart. I love hunting, fishing, playing dominoes, George Strait, and above all, God, family, and friends. A fun fact is that I have met over 25 country singers!

Over the course of my life, I have triumphed over numerous challenges, obstacles, and hurdles. Despite having to adapt to accommodate my condition, I approach each task with unwavering determination and always find success. My disability has granted me a profound appreciation for the world around me and the people I encounter. “Never Let Your Limitations Be Your Limit” is the message that I have created for myself to live by. I want people to understand that the obstacles or hurdles in life do not define or shape who you are. You can do anything you set your mind to with a little faith, motivation, and determination. As I continue my journey through life, I will cherish the lessons I’ve learned, share them with others, and never allow neuromuscular disease to define my abilities.

Meet Leo

This is Leo! He is an ambitious 5-year-old that wants to know how everything works and is always learning something new. He is a train enthusiast and wants to be a train engineer when he grows up. Leo lives with his parents and his nana, along with 2 dogs and a cat. He enjoys reading, going on walks with his family, riding his adaptive bike, driving his power wheels Lamborghini, helping everyone cook, and watching real trains (not cartoons!) on YouTube.

At the age of 10 months Leo was diagnosed with Duchenne muscular dystrophy and several months after that he was also diagnosed with mild right-sided cerebral palsy. Leo's uncle, Ryan, whom he never met, also had Duchenne muscular dystrophy. Leo's nana and mom are both carriers.

Leo hopes to spread awareness for Duchenne muscular dystrophy, as well as help other families see that you can live a full and happy life while living with a neuromuscular disease. Leo’s mom shares, “We are all in this together, and the importance of community, as well as the many resources, research, and technology available today is how we as families impacted by neuromuscular disease will thrive.” Leo is a ray of sunshine with the overall goal to spread hope.

Meet Jennifer

Having Ullrich congenital muscular dystrophy has always impacted my life in a good way. Sometimes it was difficult not doing the same things as others, but thanks to my momma, she always made sure I could do anything. Then it got even better when I started doing things with MDA. Especially Summer Camp!

I attended MDA Summer Camp from age 6 until I graduated. Thanks to MDA Summer Camp, I felt like I wasn’t alone. I was surrounded by other kids like me. They showed us that we could do anything! I've met my life-long friends at camp. That's where I met my husband at age 15. The counselor I had that year is my best friend to this day. We talk almost every day. I will forever be grateful to MDA for camp and the lessons I learned and the people that mean the most to me.

The years that I have had the privilege to be a part of the MDA community have been amazing to say the least. They have impacted my life since they first told my momma I had muscular dystrophy at age 3. Between the doctors and events, I have been able to not only advocate for MDA but also advocate for myself. They will always be a huge part of my life. I can't wait to see what all we can do together. MDA has shown me I'm not only special the way I am but I'm strong too!

Meet Jacob

Jacob has many interests, including being in the water, acting out movies, making up his own stories, shooting basketball, riding his bike, and playing board games or video games. He really likes baseball and has been part of the College of Southern Idaho baseball team since 2018!

Even with a supportive family, living with congenital myotonic muscular dystrophy is difficult for Jacob, but he keeps pushing himself to do his best. MDA has given him the chance to meet many people.

He LOVES MDA Summer Camp! His family says the experiences and friends made through involvement with MDA are the best things to come out of Jacob’s diagnosis. Jacob’s favorite saying is “always do your best, because your best is good enough!”.

Meet Fred

Being diagnosed with limb-girdle muscular dystrophy has made me a better self advocate. Having any type of disability can cause some setbacks and obstacles, but it puts you in a unique place. Do I give up or do I figure out a way to fight for what I need and deserve? This mentality made me a better dispatcher when I worked for the state Police Department, and it has made me a better father as well.

I love to spend time with my son in my free time. My other interests include music production, drones, sneaker collecting, and I’d also love to find the courage to travel more. I also enjoy staying connected to my MD/LGMD “fam.” My passion is disability advocacy. One fun fact about me is that I got to dance with Michael Jackson on stage at the Bad tour in my city when I was a kid!

I want to share first and foremost that people living with MD are living full lives and with the right allies in our community we can live much better lives. The support we receive through MDA programming helps to brighten the lives of so many families. We thank everyone who supports us but also ask that they continue to show their support until we cure this debilitating disease.

Meet Linda

Linda is an accomplished non-profit executive with a PhD in Leadership. She has traveled to over 100 countries and lived outside the US many times. She loves seeing the world and cherishes her experiences working internationally.

She is a proud mother of four adult children and proud grandmother of four as well. Since her diagnosis with ALS, Linda has focused on prioritizing the constants in her life: family, friends, and faith. She wants others to know that even with a terminal illness, you can “live each day with hope and purpose”.

MDA has provided Linda with support and information throughout her journey with ALS. She wants to help spread information about the resources and treatments available for ALS patients. Linda finds joy in connecting with others and keeping strong in her faith.

Meet Chase

I was about 13 when I was diagnosed with Friedreich’s Ataxia Muscular Dystrophy, and at first, I was in a state of total denial. I felt healthy. I looked healthy. It made no sense that I was being diagnosed with a neuromuscular disease.

Then, when I was 18, I lost the ability to walk entirely. It was incredibly hard to deal with, and I found myself being ashamed of myself, ashamed of my body, and I found myself constantly comparing myself to others. I had honestly lost all hope.

However, I eventually found the strength to move forward, thanks to the MDA for reminding me that I am not alone. Now, I’m a college student living independently on campus, doing things that I had thought I would never do, making new friends, and making memories.

I hope to be able to share my story with others and let them know that they are never alone and that their future is bright.

Meet Sumukha

When I was two years old my parents began noticing signs of weakness and fatigue. I would get tired after walking short distances and struggle to complete basic physical tasks. Even the teachers at my preschool noticed that I was behind my peers in terms of motor skills. Eventually, after two years, I was diagnosed with Duchenne muscular dystrophy.

Looking back, I am very thankful for the opportunities MDA provided for me and my family to find a sense of community and connect with other families affected by neuromuscular disease. As a kid, I always looked forward to gathering with my family and friends to participate in the Muscle Walk. At MDA Summer Camp, I participated in many fun activities and got to know other kids with muscular dystrophy. Additionally, my parents, along with family and friends, decided to organize a cultural program to raise funds for MDA, educate the community, and showcase our Indian culture. I will always cherish the time I spent performing with my brother and friends during these events.

While I have certainly had positive experiences, having DMD has presented its challenges. When I was around 11 years old, my disease started progressing and I began experiencing a lot more health complications. For a few years, I dealt with a lot of negative emotions surrounding my disability. It took the support of my family, friends, and teachers to help me develop a more positive outlook on life. Aside from health complications, I have faced barriers due to a lack of accessibility and difficulties accessing services. These situations, while frustrating, have inspired me to continue advocating for myself and others with disabilities.

Recently, I received my Master of Public Policy. I am also an MDA grassroots advocate and Partners in Policymaking graduate. I hope to use the skills and experiences I have gained to continue educating people in my community about the challenges of having a neuromuscular disease and helping others living with neuromuscular disease stay motivated and optimistic.