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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July 19, 2018

PPMD Partners with PLAE Shoes

PPMD is excited to announce a new partnership with PLAE Shoes, a leader in comfortable, stylish, hand-crafted shoes for adults and kids. PLAE is a brand many families have turned to in our community because…

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July 17, 2018

2018 Annual Conference Resource Round Up

PPMD’s 2018 Annual Conference Resource Fair Providers Each year we welcome specialized resource providers from around the country to interact with us at PPMD’s Annual Conference. We so appreciate the time and investment from all…

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May 14, 2018

The Duchenne Carrier Characterization Study at Nationwide Children’s Hospital

May is a month to celebrate mothers. PPMD’s dedication to mothers in our community is, in small part, reflected in our dedication to doing all we can to care for female carriers of Duchenne. The…

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April 19, 2018

PPMD & NIH to Host “Contractures in Duchenne and Other Neuromuscular Conditions”

PPMD and NIH are convening a group of more than 60 researchers, post-docs, neurologists, surgeons, industry partners, physiatrists, and physical therapists on April 19-20, 2018, who have experience and expertise in the development, prevention, and…

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April 11, 2018

Why is Bone Health Important?

Just like a house needs a stable frame, your body needs a stable skeleton. Bone health is important for anyone living with Duchenne, whether walking (ambulatory) or those no longer able to walk without the…

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March 27, 2018

Center Directors Publish Collective Statement Regarding Patient Access to Approved Therapies

PPMD is proud to announce the publication of a collective statement regarding patient access to approved therapies from the center directors of our Certified Duchenne Care Centers. There are many ongoing treatment trials for Duchenne and…

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