January 3, 2018

How You Can Report Serious Drug Side Effects to the FDA

When our children are hurting, we go to our medicine cabinets and take great care to select products that will ease their pain. Reduce the fever. Relieve the ache. In Duchenne, we know that the…

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December 8, 2016

How PPMD’s Certified Duchenne Care Centers Are Improving Quality & Access to Care

When I joined PPMD in 2012, care for Duchenne was all over the map. Sadly, there were over 150 clinics spread across the US, but there was no oversight of these clinics – the community…

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November 14, 2016

Duchenne Carrier Study at Nationwide Children’s Hospital

Frequently, I get calls from mothers/sisters/aunts of people living with Duchenne about issues related to being a carrier of Duchenne: Should they have carrier testing? Why should they have carrier testing? If they are carriers, what…

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January 1, 2015

Eplerenone FAQs — Early Treatment of Cardiomyopathy in Duchenne

Below are a list of FAQs regarding the early treatment of cardiomyopathy in Duchenne using eplerenone. We consulted Dr. Subha Raman of The Ohio State University Wexner Medical Center and Dr. Linda Cripe of Nationwide Children’s…

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July 15, 2014

Duchenne Cardiac Working Group Recap

Care of the heart in Duchenne is not a simple business. As a community, we realize: Prescriptions for cardiac care and surveillance differ widely between both practices and providers. Large gaps exist in cardiac research….

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