When you grow up with Duchenne, it’s all you really know. My diagnosis is a part of who I am. While sometimes that means I have to think a little differently about the way I approach aspects of my daily life, I don’t let it get in the way of my goals and dreams for the future. My Duchenne may be defined by disease progression, but I have never let Duchenne define me.

Demanding answers is part of living with Duchenne. This is why today I am asking you to help us reach our goal of $400,000 to fund the Duchenne Protein Mapping Project, part of PPMD’s Biomarker Initiative.

At a young age, I knew it was important for me to advocate for myself. I made sure I understood the different clinical trials, treatments, and options out there for me. While I had help from my Mom, doctors, and others in making my decisions, I knew I had to play an active role in planning my future.

There are so many questions when it comes to Duchenne, and the more I’ve learned, the more I’ve questioned. Why is my progression different from so many of my friends with Duchenne? Is there a reason or a pattern for why they progress in one way, and I in another?

As I enrolled in clinical trials, I realized that muscle biopsies were part of this process for some people. My brother has Duchenne as well, and has had four muscle biopsies. While I understand the need to monitor the body’s response to the investigational therapy, I wish that there is a less invasive way to compare progression. Now, with PPMD’s investment in the Duchenne Protein Mapping Project, we may have another option. Hopefully, this map will determine a pattern in the protein of individuals with Duchenne and help us gain an understanding of why people respond to therapies differently.

By harnessing data from multiple studies, PPMD hopes to find answers that will influence research and care for all ages and stages of Duchenne. Donate today and your gift will be matched. Anything you can give will help us unlock critical data and unleash the possibilities ahead.

Armed with this information, clinical trials may be designed differently to focus on various subsets of the Duchenne population. It would also help individuals like myself make more informed decisions about care and planning for the future.

PPMD’s community partners Team Joseph, Little Hercules Foundation, Ryan’s Quest and Another Day for Gray, have joined the fight by matching up to $200,000 to help us reach our goal. That means your gift today goes twice as far! Give before the end of the year to have double the impact.

Being a member of the PPMD Adult Advisory Committee (PAAC) gave me a way to use my voice. This helps keep me in control, not Duchenne. PPMD has empowered me to pinpoint how, where, and when I can help. I better understand how to be proactive about my care. I have a greater knowledge of how industry partnerships work. And I have forged a greater connection to the Duchenne community. I for one, am excited to get behind the Duchenne Protein Mapping Project because I know this will have the potential to unleash breakthroughs for our entire community.

We deserve every advantage when we are fighting Duchenne. Unlocking the data to define how this disease progresses, and why, is a next step in our fight to end Duchenne. Please support PPMD and this critical project.

Thanks for joining me in this fight!

Austin LeClaire
PPMD Adult Advisory Committee Member

P.S. The Duchenne Protein Mapping Project has the potential to unlock answers for this community. Donate before 12/31 and your gift will be matched to support this important work.

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