Josh Argall – A Father and Duchenne Muscular Dystrophy Advocate

My name is Josh Argall, and first and foremost, I am a father to three amazing children – a role of which I am most proud. Professionally, I am the Senior Director of Engagement & Operations at Patient Advocacy Strategies, a consulting firm that works with life science companies to ensure patient involvement in the drug development process. This role is deeply important to me, as I know exactly what it’s like to be on the patient side of drug development. My son, Devin, lives with Duchenne Muscular Dystrophy (DMD) and has participated in several clinical trials.

DMD has changed everything in my life and my family’s life since we received Devin’s diagnosis nearly 2 decades ago.

At the time of his diagnosis, I was a single 25-year-old father to the most wonderful 3-year-old boy. I was young, and at the time, Devin was my only child and meant everything to me.

His mother and I noticed he was a little slow to hit some milestones like crawling and walking. At least five local doctors were trying to find different solutions, including orthotics for his shoes. We noticed nothing was helping, so we went to Children’s Hospital in Milwaukee, Wisconsin. I did some homework and learned that DMD was a possibility, so I knew how devastating the disease was before we received his diagnosis.

On the first visit, they did some bloodwork, and by the second visit, we received the news. When I got the diagnosis and realized there was nothing I could do, I started instantly crying. It felt like my world had stopped. Everything was in slow motion, and all my senses were numb. I couldn’t drive, so my sister picked me up from the hospital.

After Devin’s diagnosis, I lived in a state of depression, desperation, and fear for the better part of a year. Although I knew these feelings were normal, I realized over time that I couldn’t stay in that state of mind, as it’s no way to live. I wanted Devin to love his life and dream big and achieve his goals, and I wanted to teach him to face adversity and not back down from it.

Shortly after Devin’s diagnosis at 3 years old, he became the youngest child his doctor had ever prescribed prednisone to. In the 18 years since then, we’ve participated in a clinical trial for Exondys 51, the first-ever U.S. Food and Drug Administration-approved drug to treat DMD, we’ve fought to improve awareness of and funding for DMD, and we’ve become part of a strong and resilient community determined to find treatments and cures for those impacted by this disease.

Devin has a 9-year-old brother and an 8-year-old sister who look up to and admire him immensely. This disease has always been a part of their lives. They know no different, so it hasn’t changed them, but it has taught them acceptance and instilled a service mentality within them. Through volunteering, they have met many amazing people, and have learned valuable lessons along the way.

DMD has also made me a better person. Recalling the despair I felt, I developed enormous compassion for others, and it became my mission to do all that I could to help other individuals and families dealing with this diagnosis through my advocacy and involvement in DMD-related organizations.

Since Devin’s diagnosis, we’ve been involved with many DMD organizations. Devin was an ambassador for the Muscular Dystrophy Association (MDA), and in that role, we spoke at many events, generating awareness and advocating for funding for research. We’ve also run multiple races for MDA’s marathon fundraising team, Team Momentum, tackling seven marathons and raising tens of thousands of dollars in the process.

I spent 4 years working for CureDuchenne as a senior community engagement manager and loved working with families from around the country. I enjoyed making friends within this community, and teaching others what I’ve learned as a parent to a child with DMD; however, the most thrilling aspect of this role was seeing our investments in research lead to approved treatments.

Aside from MDA and CureDuchenne, we’ve worked with Parent Project Muscular Dystrophy, the Jet Foundation, and Everylife Foundation, having spoken on many occasions with government officials to advocate for individuals’ needs.

The work I do as an advocate is making a difference not only for my son, but for everyone affected by Duchenne. I want to serve and protect the DMD community, and my goal is to live in a world where you don’t have to think about whether there is an accessible entrance or proper spacing between tables at restaurants. I want to make sure there is access for individuals with Duchenne to do all the things that anyone else can do.

I first heard about the Duchenne Muscular Dystrophy Research Program (DMDRP) in 2015, and I feel fortunate to be part of it and have my voice heard by the researchers and doctors working toward better care and treatments for people living with DMD. I’m grateful that the research supported by the DMDRP encompasses all aspects of care and efforts toward a better understanding of the disease, and I’m especially excited about research toward a cure, as it’s something I’ve prayed for and dreamt of for 18 years.

While some days are harder than others, we’re grateful to be making an impact and working with the skillful doctors and researchers in the DMDRP toward a brighter future for individuals living with DMD.

The views, opinions, and/or findings contained in this paper are those of the author(s) and should not be construed as an official Department of Defense position, policy, or decision.