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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

October 27, 2021

Calling All Individuals with Becker Muscular Dystrophy – We Need You!

Do you or a loved one have a diagnosis of Becker muscular dystrophy? If so, please read these important updates which are focused on how we can help individuals with Becker and their families. Becker…

Learn More

October 22, 2021

Race Athlete Spotlight: Matthew Colon

Meet Matthew Colon Why did you choose to join the Race to End Duchenne team? Parent Project Muscular Dystrophy has given me hope for my sons future and for that, I am honored to be…

Learn More