Getting to Know Your 2024 MDA National Ambassadors

MDA’s Ambassadors are pivotal to our mission: empowering people living with neuromuscular disease to live longer, more independent lives. We strive to fulfill our mission through care, research, and advocacy.

Our Ambassadors are incredible partners who volunteer their time, share their stories, raise awareness, and shine a light on all that MDA does and means to them – while putting a face to the community we serve.

Each year, these Ambassadors share their experiences and perspectives about living with neuromuscular disease, talk about how MDA has impacted their lives and the importance of supporting MDA, and dedicate their time and talents to valuable advocacy efforts and a multitude of events geared to support MDA’s mission.

The MDA’s National Ambassador Program has been around for over 70 years, and with this year’s additions, we are proud to have had almost 50 National Ambassadors so far. Our Ambassadors are our most visible spokespeople and some of our greatest champions for the cause. This year, we are excited to announce our 2024 MDA National Ambassadors: Ira Walker and Leah Z.

We checked in with them both to learn more about what being an Ambassador means to them.

MDA 2023 and 2024 National Ambassador Leah

2024 MDA National Ambassador Leah Z.

How would you describe your first year as the MDA national ambassador?

Being National Ambassador for the Muscular Dystrophy Association has truly been one of the greatest experiences of my life. I have learned and seen so many amazing things that MDA has done for people living with neuromuscular disease. I am so thankful for the opportunity to be a National Ambassador and to be able to share my story on a national level.

What was one of your favorite experiences thus far as a national ambassador?

My favorite experience in serving as a National Ambassador was being able to speak at the 2023 MDA Clinical & Scientific Conference and share my story (my experiences!). This conference was so impactful. I was able to see firsthand how lovingly MDA clinicians and scientists from all over come together for one purpose, which is to find effective treatment for their patients living with neuromuscular disease.

Another fond memory and wonderful experience that I have was meeting my 2023 fellow National Ambassador, Mrs. Amy Shinneman. I really enjoyed working with her. Mrs. Shinneman has been a strong influence in my life. I am blessed to know her. She is a perfect model for young women – and all people – in the neuromuscular disease community.

What are you looking forward to in your second year as a national ambassador?

First of all, I am so thankful to be given a second year as National Ambassador. I am so excited to be able to serve another term because I am able to plug in all my experiences from my first year towards the next. I hope to use this knowledge to perfect my Ambassadorship. Mostly, I am excited to have more speaking engagements and to make more connections with families.

I hope to bring the neuromuscular disease community even closer and influence others to become ambassadors in order to continue to raise awareness. This is so important to me because hearing others from our community share their stories has personally given me hope and inspiration to continue striving. And I want everyone in the community to know that sharing your story is important and empowering – hearing others’ stories has certainly encouraged me!

How has MDA impacted your life to this point?

The MDA has impacted me immensely. The Muscular Dystrophy Association displays nothing but love to people living with neuromuscular disease. I am grateful to have witnessed firsthand MDA’s model to find effective care and create groundbreaking research and promising treatment in order for us to live our best lives! MDA has brought me and others like me so much hope, care, and love. I am definitely living my best life!

Thanks to the Muscular Dystrophy Association and the amazing medical team that they blessed me with, I was able to obtain a diagnosis for my condition at the age of 6. I was able to learn so much about my condition. I am lovingly cared for by the best doctor one can ever ask for and I am hopeful for my future.

What is one thing you would like everyone out there to know about MDA that you think may not be widely known?

One thing that people might not know about the MDA is that they truly work hard to get the latest and best treatment for their patients. Everyone that I have come in contact with at MDA has been very kind and extremely caring. They have truly given the gift of life back to their patients.

MDA has done so much for me personally. They have helped me understand my condition and have shown me that anything is possible. I have met so many amazing people and made lifelong friends at MDA summer camp. Thanks to MDA, I have been able to express myself freely and have come out of my shell. I love MDA and their incredible team!  Everyone who is a part of the MDA family should be proud of the impeccable work they have done and continue to do.

Do you have any words of wisdom to share with our newest national ambassador?

Congratulations! Welcome to the family! Be open to everything and do not be afraid to share your story. When you share your story, you can inspire many others. Enjoy every moment you have! When it comes to serving, there are no little jobs – smaller tasks have great impact.   I am looking forward to working with you and so excited to see what’s ahead for you. You’re going to do great!

MDA’s New 2024 National Ambassador Ira Walker

2024 MDA National Ambassador Ira Walker

What are you most excited about as you become MDA National Ambassador?

Being a member of the MDA family since my youth, it’s a humbling and great honor to be named the 2024 MDA ambassador. As the national ambassador, I’m ecstatic to be a valued partner to this amazing organization and offer an energetic voice that exclaims and brings into focus the great initiatives that are active in the fight to bring a cure to those living with neuromuscular disease.  My mission and ambition are to frequently meet with individuals and their families through in-person engagements and virtually to offer encouragement, motivation and hope for a bright tomorrow.

What is your biggest goal as a National Ambassador? 

Having fully obtained independence as an adult with a neuromuscular disease in beautiful south Florida, I’m committed to utilizing this platform as a national ambassador to encourage and inspire others with neuromuscular disease to reach for independence and to be a guide to help many achieve their goals and aspirations on independence. This is possible through my willingness to openly share my story and playbook on how to not only live, but to thrive while living with a disability. A secondary goal is to be a part of innovative activities and initiatives that extend gratitude and appreciation to all our men and women in uniform and first responders that support us on a daily basis and participate in MDA’s mission.

What would you most like people to know about living with your condition? 

The beauty of living with a unique condition is that one gets to experience life through a different lens. It’s a lens that clearly shows the authentic love of individuals who care for those with neuromuscular disease. The lens that shows the power of those living with neuromuscular disease when we raise our voices and advocate for change and equality in our communities. A lens that radiantly reflects hope and progress that a myriad of research initiatives deliver through the steady flow of treatment options and medical breakthroughs. The lens of great promise that one day, through collective efforts, we will discover a remedy, a viable treatment, for those living with neuromuscular disease.

What would you most like people to know about MDA? 

I have been part of the MDA family since I was a child and I confidently see MDA as a phenomenal organization that enables those living with neuromuscular disease to live victoriously and to courageously strive for hope.

What is one word that best describes you? 

Valiant

What are some of your favorite hobbies and activities?

As a south Floridian, I take part in a variety of outdoor activities year-round, including fishing, boating, relaxing at the beach, and hiking along the accessible trails. I’m a cultural connoisseur and frequently attend shows at one of the many performing arts venues. When I have available leisure time, you can catch me taking in a musical, enjoying a performance at the symphony, or seeing a great concert. When not exploring the great outdoors or seeing a quality show, one can usually find me catching a sporting game. Since childhood, I’ve been a huge baseball enthusiast and as a native of St. Louis, I’m a lifelong Cardinal fan!

What MDA Care Centers have you gone to, and how has multidisciplinary care helped your care/treatments?

I’ve been fortunate to receive world class care and treatment at MDA Care Centers in both St. Louis and Miami. Receiving care through a multidisciplinary clinic has been extremely beneficial and valuable in providing a vivid picture of my health by showing and pinpointing areas where improvement in health is most needed and showing areas where treatment has helped to improve my condition. The physicians, medical staff and individuals from MDA at these Care Centers have always been encouraging, patient, and thorough in ensuring the very best care and experiences are received.

Reflecting back on attending MDA Summer Camp as a child, what impact did MDA Summer Camp have on you in regard to gaining independence and confidence?

Yes, MDA Summer Camp! As a kid and young adult, camp was always the highlight of my summer and the week that I looked forward to most each year. As a kid, MDA camp and the outstanding volunteers that brought the magical week to life provided the environment that instilled in me at a young age a love of the great outdoors and a spirit of being physically active. During the last few years that I attended MDA Summer Camp, I did so with a friend: my college roommate, my best friend, Jon. Those years were not only the best times, the best years of my life, they were formative years where I developed the courage and confidence to be truly comfortable in my skin. Having Jon with me during those years helped me gain the charisma, wit, and fearlessness that I still hold as attributes today.  Jon’s companionship and authentic love was the gift from heaven that helped me evolve into the man I am today. To encapsulate my amazing experience of MDA camp, the adventure of attending camp helped me to know that I am more than capable of living a vibrant, active, and bold life full of excitement and wonder.

What does MDA Advocacy mean to you?

The way to see significant change and meaningful difference in the lives of those living with neuromuscular diseases is through the vigorous efforts of advocacy. I’m excited that, through my role as a National Ambassador, I will have the opportunity to participate and be on the forefront of many advocacy efforts and initiatives. By utilizing the journey of my life, the passion and spirit of MDA, and the power of voice, I’m of the belief that my role as an Ambassador offers the opportunity to be a part of true change.