February 19, 2019

End Duchenne Tour Recap: Las Vegas, NV

PPMD was thrilled to head to Las Vegas, NV for our first End Duchenne Tour stop of 2019 on February 2. More than 45 people came together to learn about the latest information and resources for Duchenne…

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February 5, 2019

PPMD to Host Gene Therapy Policy Forum on March 4, 2019

PPMD is excited to announce that this year’s action-packed Advocacy Conference, March 3-5 2019 will include a special Gene Therapy Policy Forum on Monday, March 4 from 9am to 3pm at The Mayflower Hotel in D.C….

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February 1, 2019

Register Today for PPMD’s 2019 Advocacy Conference!

The PPMD Advocacy Conference registration is live! Join us March 3-5 in Washington DC to advocate for Duchenne directly with Members of Congress. Our community’s presence in Washington has been critical in helping to move the…

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January 31, 2019

PPMD Kicks Off 2019 End Duchenne Tour in Las Vegas

PPMD is excited to kick off our 2019 End Duchenne Tour in Las Vegas this weekend! Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy,…

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January 15, 2019

Relive the Magic from the Disney Marathon Weekend

Four days of races, 48.6 miles, over $400,000 raised…plus new friends made and countless memories created – it was an amazing Walt Disney World Marathon Weekend for our entire Race to End Duchenne team! From…

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January 3, 2019

Because of your heart — WE DID IT!

For the last few weeks, PPMD has asked you to consider supporting the expansion of our Cardiac Initiative so that we can ensure potential Duchenne treatments support heart health. We set our most ambitious fundraising…

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December 28, 2018

We’re fighting to save the heart — join us

The Friar family is made up of fighters. We’re very nice people, don’t get me wrong! But when faced with adversity or challenges, we fight back. As a family. When our oldest son Kevin was…

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December 25, 2018

The heart of ending Duchenne

Just more than a year ago, I knew little about Duchenne muscular dystrophy and had never heard of PPMD. So much has changed since the day when our then 4-year-old grandson, Henry, was diagnosed. Today,…

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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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