December 18, 2018

A strong heart — is more time with my family

I hope this note finds you and your family enjoying the holiday season! I am a 41-year-old with Becker muscular dystrophy. Until recently, I served on PPMD’s Adult Advisory Committee (PAAC), and I’m extraordinarily proud…

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December 18, 2018

Keep hearts strong — all gifts doubled!

If you’re part of the Duchenne community, you have likely seen parents share updates from their child’s cardiac appointment. The anxiety of these appointments can be incredible — stability at a doctor’s appointment when you…

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December 17, 2018

End Duchenne Tour Recap: Cincinnati, OH

PPMD headed to Cincinnati, OH for our End Duchenne Tour stop on November 17, 2018. Many families and members of the Duchenne community came together to learn about the latest information and resources for Duchenne families. PPMD…

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December 13, 2018

ICER Announces the Review of Duchenne Products – What Does This Mean?

Thanks to decades of advocacy, funding and innovation, our healthcare landscape is rapidly changing. As new therapies emerge into the marketplace, patients, providers, and payers are faced with challenges as to how to discern which…

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December 13, 2018

PPMD Announces Partnership with THREAD to Enhance Current Duchenne Registry Platform

PPMD is excited to announce our new partnership with THREAD — a company specializing in remote/virtual patient research via their platform — to enhance the patient engagement and care management tools for The Duchenne Registry. Building…

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December 12, 2018

PPMD Hosts Inflammation Meeting

Steroids. If you are part of this community, you probably have strong feelings about steroids in Duchenne – feelings that can vary in range on any given day. But steroids are standard of care according…

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December 12, 2018

WATCH: The Heart of PPMD’s Research – Webinar Recording

ICYMI: Yesterday, I had the privilege of hosting an in depth look at PPMD’s cardiac research priorities in Duchenne for 2019. If you were unable to join us live, I hope you will take a…

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December 10, 2018

Your gift to critical cardiac research will be matched!

When PPMD started in 1994, research to treat Duchenne muscular dystrophy was virtually nonexistent. Nearly 25 years later, we have a clinical trial pipeline full of possibility with over 25 active trials, 30+ companies, and…

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December 6, 2018

Why the Heart Matters

Disclaimer: I am a selfish person. My sons Chris and Patrick died of heart failure. I agree the primary insult was pneumonia, but their hearts were broken in so many ways that they could not…

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December 6, 2018

Wave Life Sciences Announces Positive Phase 1 Results for WVE-210201 in Duchenne Muscular Dystrophy

  Wave Life Sciences announced positive safety and tolerability results from the WVE-210201 Phase 1 clinical trial today. PPMD continues to be optimistic about the progress the team at Wave Life Sciences is making with…

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