October 1, 2018

New Duchenne/Becker ICD Code in Effect Today — G71.01

Today at 12:01 AM  – while most of us were sound asleep – the International Classification of Diseases (ICD) code for Duchenne/Becker muscular dystrophy changed.  Previously, Duchenne muscular dystrophy was classified among a broad category…

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September 26, 2018

PPMD Continues Commitment to Duchenne Newborn Screening through Launch of Pilot in New York State

– PPMD Continues Commitment to U.S. Duchenne Newborn Screening Program – For the last 4 years, PPMD has been leading a national effort to build a Newborn Screening (NBS) infrastructure for Duchenne in the U.S. aimed…

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September 17, 2018

Behavior Challenges and Duchenne: Part 1 – Encouraging Positive Behavior

Psychosocial health (also called “mental health”) includes behavior, emotional adjustment, learning/school success, and relationships. These things are very important for overall well-being and quality of life. Addressing the psychosocial needs of a person with Duchenne…

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September 17, 2018

PPMD’s Ryan Fischer Joins the Muscular Dystrophy Coordinating Committee (MDCC)

When our community first came together with our Congressional champions in 1999 to carve a path forward for our Duchenne community, among the priorities we had was for all federal agencies that impacted our community…

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September 14, 2018

2018/2019 Flu Vaccination Recommendations

The flu virus is constantly changing, with new “models” of flu appearing each year. The Center for Disease Control and Prevention (CDC) looks at the strains of influenza that have affected Australia during their flu…

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September 11, 2018

Natural disaster resources for families living with Duchenne

We are officially in the midst of hurricane season, with a major storm aimed at a large portion of the east coast later this week. To all of our PPMD Family in the path of…

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September 10, 2018

VIDEO: Head, Shoulders, Knees, and Toes

There are simple things we know will help our children living with Duchenne. But with all of the big things that we try to remember to do every day (and often several times a day!),…

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September 6, 2018

Updated Duchenne Care Guide for Families

You have probably heard a lot about ‘Care Considerations’. These were the first Standards of Care published in 2010. The purpose of developing Standards of Care is to ensure every person living with the diagnosis…

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September 5, 2018

PPMD Designates American Family Children’s Hospital a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named American Family Children’s Hospital in Madison, Wisconsin our 19th Certified Duchenne Care Center. PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people…

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August 20, 2018

PPMD’s Certified Duchenne Care Center Program – August 2018 Bi-Annual Report

PPMD’s Certified Duchenne Care Center (CDCC) Program was developed to make comprehensive Duchenne care and services, provided in agreement with the CDC Care Considerations, available and accessible to as many families as possible, and to strengthen…

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