November 8, 2021

Recap: Recent Research Updates

Welcome to FALL Time flies! Over the past few months, we have seen a number of announcements regarding drug development, changes to clinical trials, and new trials opening or on the horizon. For many, it…

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November 6, 2021

Race Athlete Spotlight: Jessica Divin

This year, Jessica Divin ran the Chicago and NYC Marathon as part of the Race to End Duchenne team.  Her inspiration: her son, Ben. Meet Jessica Why did you choose to join the Race to…

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November 5, 2021

PPMD joins 129 patient advocacy and provider organizations in a letter supporting critical medical research funding

Earlier this month, PPMD joined 129 patient advocacy and provider organizations in a letter to Congress urging them to enact the 2022 Defense Appropriations Act to ensure that the Defense Health Research Programs, including the Congressionally Directed…

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November 4, 2021

Genetic Counselor Awareness Day: Celebrating PPMD’s Certified Genetic Counselors

Today, on Genetic Counselor Awareness Day, we celebrate PPMD’s Certified Genetic Counselors, Ann Martin and Niki Armstrong – two incredibly supportive and essential assets to the Duchenne community. Ann and Niki are invaluable members of…

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November 3, 2021

Record-Breaking 16th Annual Sam’s Night Raises Over $760,000 for PPMD

After the Killian family set the bar high in 2020 with over $532,000 raised at their annual Sam’s Night event, they managed to top that at this year’s event.  The 16th annual Sam’s Night has…

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November 3, 2021

Race Athlete Spotlight: Ernie Bueno

This November, Ernie Bueno will be running the NYC Marathon for the third year as part of the Race to End Duchenne team. He does it all for his friend and inspiration, Sam. Meet Ernie…

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November 2, 2021

Pfizer’s Phase 3 Gene Therapy Trial, CIFFREO: Community Questions Answered

Gene Therapy is on everyone’s mind these days. We wonder about opportunities, clinical sites, neutralizing antibodies and most recently details of a small number of Serious Adverse Events (SAE) and what these learnings might mean…

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November 1, 2021

November is National Family Caregivers Month

To be fair, I find it a little odd that we celebrate caregivers for only a single month, when caregivers are caring for their loved ones every single day of every single month. In this…

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November 1, 2021

Calling All Adults with Duchenne & Becker: Join the 2022 PPMD Adult Advisory Committee!

Been looking for a way to engage with the community a bit more? Have a personal experience that you would like to share with the larger community or federal and state advocacy efforts? Interested in…

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October 28, 2021

Edgewise Therapeutics shares positive topline results from EDG-5506 Phase 1 Study and doses first Becker patients

Edgewise Therapeutics, Inc. announced today positive topline results from the Multiple Ascending Dose (MAD) portion of a first-in-human Phase 1 clinical trial assessing the safety and tolerability of escalating doses of EDG-5506, an orally administered…

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