October 25, 2023

Community Report: Key Insights from the April 2023 Endocrine and Bone Workshop

  In April 2023, an international workshop sponsored by Parent Project Muscular Dystrophy and Duchenne Parent Project, Italy, led by Dr. Leanne Ward, Pediatric Endocrinologist at Children’s Hospital of Eastern Ontario (CHEO), gathered over 30…

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October 20, 2023

CDCC Spotlight: Helen DeVos Children’s Hospital

Open Doors Creating Connection At a routine multidisciplinary clinic appointment, individuals meet their neuromuscular provider, subspecialists, and ancillary staff. But what if you were able to add “meeting other kids and families” to the list…

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October 17, 2023

WATCH: Supporting Families Through Decision Making (Webinar Recording)

PPMD webinar explores how palliative care teams can support families through decision making PPMD’s Alexis Hazlett and Patrick Moeschen were recently joined by panelists Dr. Lauren Treat, Neurologist and Palliative Care Physician at Colorado Children’s,…

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October 6, 2023

Finding and Accepting Help

PPMD recently launched “Connect Community Chats” to provide an opportunity for families and individuals living with Duchenne to come together virtually in a small group to talk about important life topics. The most recent discussion…

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October 5, 2023

What is Palliative Care? Understanding an additional layer of support

Many families are unfamiliar with Palliative Care and often confuse the services for hospice or end of life care. However, palliative care is so much more. Palliative Care is a specialized system of care aimed…

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September 29, 2023

WATCH: Advocating for Access: Insurance 101 (Webinar Recording)

Navigating insurance can be daunting – from decoding acronyms, to understanding the types of health plans, and more. During September’s Advocating for Access webinar, the PPMD and Little Hercules Foundation teams dug into some of…

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September 21, 2023

CDCC Spotlight: Children’s Hospital Los Angeles

Breaking Barriers: Dedication to All Families Dr. Leigh Ramos-Platt, MD, Medical Director of the Children’s Hospital Los Angeles’ (CHLA) Certified Duchenne Care Center in the hospital’s Neurological Institute, dedicates her career to serving young patients…

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September 19, 2023

RSV, COVID, and Flu – oh my!

As school has started and the winter season approaches, the increase in respiratory viruses is soon to come. This year it’s important to protect yourself, your children and your family from all respiratory viruses, but…

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September 15, 2023

PTC Therapeutics Announces Negative European Medicines Agency Opinion Regarding Full Authorization of Translarna

PTC Therapeutics today shared that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended not renewing the Marketing Authorization for Translarna™ (ataluren), a treatment for Duchenne patients…

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August 31, 2023

CDCC Spotlight: Arkansas Children’s Hospital

Reaching Rural Areas When thinking of expert Duchenne care and research, one may think it only exists in large cities. However, Dr. Aravindhan Veerapandiyan, aka Dr. Panda, the Director of Arkansas Children’s Certified Duchenne Care…

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