February 22, 2022

PPMD’s Power of Us Summit Series: Caregiver registration is now open!

The Power of Us Summit Series — Registration for Parents, Grandparents & Caregivers Is Now Open! April 28-30, 2022 | Atlanta, GA The Power of Us is stronger than any of us alone. Over the…

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February 11, 2022

Connect with PPMD’s Care Team

At PPMD, we place immense value on personal connection with the Duchenne community to provide support and partner with you on this complex journey. As our organization continues to grow, we aim to remain present,…

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January 26, 2022

Save the Date for PPMD’s Upcoming Events!

PPMD is excited to announce our 2022 schedule of educational events, including PPMD’s Annual Conference (hybrid in-person & virtual meeting), End Duchenne Tour (both in-person and virtual stops), and Advocacy Conference (virtual). New this year, PPMD will host The Power of…

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January 24, 2022

Thanking PPMD’s Kathi Kinnett for 20+ Years of Service to the Duchenne Community as She Retires

PPMD celebrates Kathi Kinnett, MSN, APRN, a dedicated member of our incredible Care Team for 10 years, as she announces her retirement at the end of this month. Kathi joined PPMD in 2012 after years of…

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December 1, 2021

PPMD Hosts “Dystrophinopathy and the Brain” Meeting in New York City

“Is my child happy?” “Do they have friends?” “Are they learning as easily and as quickly as the other students in their class – are they keeping up?” “Can I parent this child?” “Why are…

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November 18, 2021

WATCH: Connect with the Experts – Pulmonary Care (October 2021)

During this year’s PPMD Virtual Annual Conference, we hosted a panel titled: A Patient’s Take on Pulmonary Management. We received a large volume of questions during this live session, so many that we were only…

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November 9, 2021

WATCH: Pediatric COVID-19 Vaccination (ages 5-11) & Duchenne (Webinar Recording)

On November 5, 2021, PPMD invited Drs. Tim Cripe and Tim Franson back for another COVID-19 vaccine webinar to provide updates on the new pediatric approval and what it means for the Duchenne community. Our…

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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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October 6, 2021

PPMD Completes Successful Pilot in Newborn Screening for Duchenne Muscular Dystrophy

PPMD’s Newborn Screening Pilot recently completed two years of ground-breaking recruitment. More than 36,000 families consented to participate and more than 36,000 babies have been screened for Duchenne Muscular Dystrophy in New York State. As…

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October 5, 2021

PPMD releases results of second survey on impact of pandemic on families

Since the start of the COVID-19 pandemic, Parent Project Muscular Dystrophy (PPMD) has surveyed Duchenne and Becker families to better understand how the patient experience with care, clinical trials, and access to approved therapies has…

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