March 11, 2019

Respiratory Management in Duchenne

Improved respiratory (breathing) management over the past 10 years has significantly improved the quality and length of life for people living with Duchenne. In October 2018, articles discussing specific areas of Duchenne care were released. One…

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February 25, 2019

Rehabilitation, Therapy and Appeal Letters for Medical Equipment

Assistive devices and adaptive equipment are supposed to make life easier. So why is getting this equipment so hard? Every month, PPMD members get notes from parents and rehabilitation teams who are frustrated with the…

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February 20, 2019

PPMD Contributes to Clinical Practice Recommendations for Managing Adrenal Insufficiency Risk in Duchenne

Long term glucocorticoid (steroid) therapy has many clear benefits such as improving muscle strength and maintaining cardiac and pulmonary function. However, prescribed steroid (prednisone, Emflaza, or deflazacort) regimens need to be followed closely to avoid…

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February 15, 2019

WATCH: Caring for the Caregiver – Webinar Recording

Caring for a child with a complex condition such as Duchenne or Becker muscular dystrophy can be a tremendous burden on caregivers, especially if those caregivers are family members. Not only is there an emotional…

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February 11, 2019

PPMD Designates University of Rochester Medical Center as a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named the University of Rochester Medical Center (URMC) the 24th Certified Duchenne Care Center. This expanding program of elite centers, created in 2014 as part of PPMD’s Certified Duchenne Care Center Program, reviews and…

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February 6, 2019

Update from the 2nd Annual Duchenne Healthcare Professionals’ Summit

Last month, PPMD hosted the second annual Duchenne Healthcare Professionals Summit. The intent of the Summit was to bring together providers from Certified Duchenne Care Centers and other centers interested in participation in the CDCC…

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January 29, 2019

PPMD Designates Children’s Hospital of The King’s Daughters a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Children’s Hospital of The King’s Daughters (CHKD) the 23rd Certified Duchenne Care Center. PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people living…

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January 17, 2019

Parent Project Muscular Dystrophy Publishes 10 Year Registry Report

PPMD is excited to announce the release of the Ten Year Registry Report. This report is the culmination of data provided by registrants in The Duchenne Registry, as well as collaborative work with expert clinicians…

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December 18, 2018

Keep hearts strong — all gifts doubled!

If you’re part of the Duchenne community, you have likely seen parents share updates from their child’s cardiac appointment. The anxiety of these appointments can be incredible — stability at a doctor’s appointment when you…

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December 12, 2018

WATCH: The Heart of PPMD’s Research – Webinar Recording

ICYMI: Yesterday, I had the privilege of hosting an in depth look at PPMD’s cardiac research priorities in Duchenne for 2019. If you were unable to join us live, I hope you will take a…

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