Getting to Know Your 2025 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 for 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 the 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 Lily S.

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

MDA 2024 and 2025 National Ambassador Ira

How would you describe your first year as the MDA National Ambassador?

2025 MDA National Ambassador Ira Walker

A complete success filled with a plethora of great moments and connection. When I took on the role of National Ambassador, I came up with the mission to encourage, inspire, uplift, and emulate courage while helping to guide others with neuromuscular conditions to reach for independence, self-fulfillment, and be the very best version of themselves. Now, I believe I accomplish that mission by setting a good example of peace and happiness and letting people into my life as a man with neuromuscular disease. I hope to show others that, even though challenges and adversity present themselves through the seasons of life, one is able to be a champion. It’s an honor that I’m beyond blessed and humbled to receive.

What was one of your favorite experiences thus far as a National Ambassador?

I would say that my favorite moment was going to the annual MDA Clinical & Scientific Conference and speaking in front of the Care Center Directors. Why? This was my opportunity to candidly share with some of the nation’s top neuromuscular physicians that I truly had one of the best MDA care physicians in my early adult life, Dr. Anne Connolly. Celebrating Dr. Connolly, someone who I admire greatly and one of my favorite individuals on planet earth, was great. When you think of a doctor that truly cares, truly gets to know her patients, truly has a full heart for the neuromuscular community, that’s Dr. Connolly. Yes, celebrating her in front of her colleagues through my care center speech was easily the top moment of the year!

What are you looking forward to in your second year as a National Ambassador?

This is an amazing opportunity to be the MDA National Ambassador during the 75^th anniversary and to be in this leading role during such a grand time in this great organization’s history. I have a goal to participate in ways that can truly leave a value-added impact to this organization and community. My hope for the 2^nd year is that I receive even more opportunities to connect with the many outstanding individuals in our diverse community and to continue to serve as a source of encouragement. In addition, I have a goal to utilize the articles I write in Quest as opportunities to describe the many accomplishments by those in our community and to celebrate those who are true champions and achievers.

We have really enjoyed reading your Quest Guest Blog Series Insights by Ira throughout the last year. How has being able to share your personal experiences and stories with such a widespread audience helped you reach your goals as a National Ambassador?

As an individual that is passionate about writing, having a quarterly blog in Quest has been the right avenue for me to share my message of hope and encouragement! The blog provides me with a way to share my experiences thoroughly and authentically as an adult with a neuromuscular disease. After each article, the positive feedback I get by those in the MDA community who share that the blog posts have been impactful always warms my heart and gives me assurance that the articles are being received as notes of inspiration.

How has the MDA impacted your life to this point?

Since the start of my life, MDA has been a positive force of encouragement, enlightenment, and motivation for me. The staff at MDA and our amazing community have consistently been a guiding light to evolving my life for the better. My time as a National Ambassador has only helped to amplify this golden bond and relationship that is near and dear to my heart.

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

In September, I got the opportunity to travel to Washington D.C. and advocate to law makers on behalf of MDA. This amazing opportunity allowed me to see that MDA is an organization that is substantially making a better day for those in the neuromuscular community. It’s truly an organization that cares and is invested in a bright future!

Do you have any words of wisdom to share with our newest National Ambassador?

There’s great responsibility in being the national face of any organization, especially one that adds significant value to the neuromuscular community the way that MDA does.  Remember to always lead with authenticity and with courage – and let the best part of you shine!

 MDA’s New 2025 National Ambassador Lily

2025 MDA National Ambassador Lily S.

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

As an MDA National Ambassador, I am proud to support the Muscular Dystrophy Association’s mission to empower individuals living with neuromuscular diseases. I look forward to contributing to this important work on a larger scale.

What is your biggest goal as a National Ambassador?

As I step into this role, my biggest goal is to foster community and support in the neuromuscular community. Often disability is perceived by society as an enormous tragedy that cannot be reconciled with. My mission, in my daily life and in my advocacy work, is to exhibit the immense joy and prosperity that can and does exist in the disability community.

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

Living with Charcot-Marie-Tooth (CMT) is a complex and nuanced experience that contains a wide range of the human condition. There exists a dichotomy between the utmost joy and heartbreak; there is much happiness and friendship, but also immense pain and debilitation. Individuals affected by CMT possess intelligence and capability and are actively working to better our futures.

What would you most like people to know about MDA?

MDA is a leading non-profit organization dedicated to helping people with muscular dystrophy, ALS, and related neuromuscular diseases. While many people are aware of their groundbreaking research efforts, MDA does so much more. They provide essential patient care and support services, including summer camps, care centers, and support groups. MDA also advocates for policies that improve the lives of those affected by these diseases. I wish more people knew about the breadth of MDA’s work, as it truly makes a difference in the lives of patients and their families.

What is one word that best describes you?

Aspiring- I am incredibly driven and often work toward goals bigger than just myself.

What are some of your favorite hobbies and activities?

Outside of school and my advocacy work, I take great joy and pride in running a menstrual justice nonprofit, tutoring elementary and middle school aged children, and spending time with my friends. On a day off, I enjoy sitting down with a good book and a delicious cup of coffee or matcha tea.

As you get closer to graduating high school, what are your goals and ambitions for the future?

I am planning on attending a four-year institution with the goal of attending graduate school. While undecided about my major, I am interested in law and the social sciences as I would love to work in the disability advocacy space in the future.

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

When I was a new patient without established providers, my local MDA Care Center allowed me to receive all the services I needed in one visit. As a small child, this was convenient and a visit I looked forward to. Multidisciplinary care can truly make the biggest difference in the lives of patients and their families. The convenience, world-class care, and ability for providers to work together to support patients is unique and incredible for patients and their families.

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?

MDA Summer Camp dramatically changed my life. The six days I spent at camp when I was eight years old were transformative; I finally saw myself in other kids and was able to connect with my peers in an intimate and meaningful way. Essentially, camp was the first place in which I felt truly understood and supported. Through this, I was able to express my emotions about living with a disability and have a platform to do so: one afternoon, I sat down in front of a camera for a formal interview. This video would contain footage of campers describing camp to donors. This was the first formal setting in which I was given the space to speak to others about my disability, and this experience changed the trajectory of my life. Having developed those skills at a young age at camp, I now am able to tell my story to create change and understanding. These new skills and connections with others made me feel substantially more confident about my disability. I was shown that people with disabilities exist everywhere and that we are capable of living happy and fulfilling lives. The connections I made over my five years at camp have carried on years later, a testament to the pure magic of camp and the MDA.

You have had a busy year with advocacy, including running your own non-profit, advocating for disability rights in your community, and participating in the 2024 MDA Hill Day Event and sharing that experience with Quest. What has your advocacy work meant to you?

My advocacy work has given me a voice in an otherwise extremely vulnerable position. Those with progressive diseases live at the will of their conditions, often forcing them to completely give up control. By using my story to enact positive change, I feel in control of my future and as if I have the power to positively affect the futures of those I care about.

Why is it important to you to make a meaningful impact in the lives of others?

In my mind, it is imperative for me to turn the pain and heartbreak CMT has caused me into a true and unending purpose. I believe that I have CMT for a reason, and I must use the skills and gifts I have in any way possible to support people with neuromuscular disease.