January 18, 2017

PPMD Awards $600,000 Grant to NJIT & Talem for Next Phase of Upper Extremity Exoskeleton

Robotics Ensuring that the worlds of teens and adults with Duchenne ‘grow bigger’, as they grow older by expanding their reach – both literally and figuratively. Combing your hair. Lifting a glass to your mouth….

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January 6, 2017

PPMD Awards Nationwide Children’s Hospital $2.2 Million Grant to Explore Gene Therapy in Duchenne

Today, PPMD announced a $2.2 million dollar grant to Dr. Jerry Mendell, Dr. Louise Rodino-Klapac (co-PI), and Nationwide Children’s Hospital.  Our purpose in awarding this grant is to open and accelerate the field of gene…

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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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July 20, 2015

PPMD Awards $70,000 Grant to Talem Technologies as Part of Robotics Initiative

Grant Will Be Used to Support Pilot Study for X-Ar Exoskeletal Arm Technology Parent Project Muscular Dystrophy has awarded Talem Technologies a grant for over $70,000 to support a pilot study of their X-Ar exoskeletal arm technology. The grant…

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April 28, 2015

Let’s Get Them Moving Workshop: Our First Steps Toward That Goal

Yesterday, Parent Project Muscular Dystrophy and Duchenne Parent Project-Netherlands (DPP) co-hosted the first ever conference on assistive technology for Duchenne muscular dystrophy. There were twenty-five participants in the workshop, from six countries, representing academia (both researchers and…

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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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December 18, 2014

The Solid Suit: Combining Forces to Enhance Strength

It was a bit like being in the midst of a dream. You are seated at a table, looking out high above a river. Surrounding you are some of the world’s top experts in Duchenne…

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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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