November 16, 2022 / Community

Make PPMD’s commitment to the heart Stronger with Every Beat

The heart is a muscle too. This has been my mantra for many years as I thought about the various therapies being tested to help improve skeletal muscle. I wondered if the heart was at risk.

We have invested in cardiac research to answer this question. And now we know the answer is YES.

For close to 30 years, I have fought alongside families like yours in the fight to end Duchenne. I have shared your joy, I have cheered your triumphs, I have experienced your sadness, and together we have channeled our collective strength as a community into actions, continuing to learn from each roadblock as we address the breadth of this complicated disease. Despite how far we have come since my sons were diagnosed, I still watch as hearts grow weaker and eventually fail, leaving our Duchenne families asking how, why, and what could we have done differently.

We have come a long way, but we are still losing those we love.

I ask you to join me in prioritizing cardiac care and research for individuals with Duchenne and Becker by helping us raise $400,000 to support PPMD’s Cardiac Initiative and commitment to ACTION.

As part of PPMD’s ongoing Cardiac Initiative, we have committed to funding the Advanced Cardiac Therapies Improving Outcomes Network (ACTION), a learning health system focused on children and adult heart disease patients at risk of heart dysfunction or with heart failure.

Your generosity will fund ACTION’s goal to optimize care and improve outcomes for those living with Duchenne-related cardiomyopathy. Your gifts will also support ACTION’s critical efforts to create the largest multicenter database of Duchenne cardiac care practices and outcomes to date.

This investment comes on the heels of PPMD’s first-ever Duchenne Cardiac Care meeting earlier this year. The meeting consensus was that there is a critical need for more sufficient evidence-based data to improve the standardization of protocols and harmonization of research in real-time across networks to better understand the trajectory of Duchenne cardiomyopathy.

Give now to make Hearts Beat Stronger.

This award to support the expansion of ACTION’s Duchenne Muscular Dystrophy project to the broader ACTION Muscular Dystrophy initiative marks a pivotal step in responding to this need.

ACTION leverages the power of more than 50 centers throughout the United States to improve critical outcomes in pediatric heart failure, including in patients with Duchenne and Becker. This project will help us learn more about how to care for the heart now, and moving forward. It will also help us understand how new therapies impact the heart, so this information can be shared with the community as soon as possible, affecting real change for this patient community.

Thanks to your support, our Cardiac Initiative becomes Stronger With Every Beat. Make your contribution today.

This work is personal to me. Because of your support, I am doing something today that I couldn’t do for my sons so many years ago. Thank you for joining me in making sure hearts beat stronger by prioritizing cardiac care and research for our loved ones with Duchenne.

Pat Furlong
Founding President & CEO

P.S. Supporting PPMD’s Cardiac Initiative and commitment to ACTION prioritizes the heart today. Help make PPMD’s cardiac focus Stronger With Every Beat.

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