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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August 25, 2023

WATCH: Advocating for Access: Navigating Approved Therapies in Duchenne (Webinar Recording)

Understanding and navigating insurance access can be daunting. That’s why PPMD kicked off a new webinar series, “Advocating for Access,” earlier this week with its first monthly installment on Navigating Approved Therapies in Duchenne. PPMD’s…

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August 21, 2023

Safe & Unsafe Medications in Duchenne

PPMD’s Safe & Unsafe Medications Resource lists medications that are frequently used in the management of Duchenne, as well as both over-the-counter and prescription medications used for other conditions not specific to Duchenne that you…

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August 17, 2023

CDCC Spotlight: Children’s Health of Dallas

Providing Support for School It’s difficult enough navigating the medical system, but many parents of children with Duchenne face challenges while seeking accommodations and support through their school systems as well. At Children’s Health of…

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August 10, 2023

A Story of Firsts

On a sunny day in June of 1984, the word “Duchenne” first entered my life. “Go home and love them.” Well intentioned advice from doctors who could offer no hope. Could direct us to little…

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