June 10, 2019

Primary & Emergency Care in Duchenne

One of the first questions parents are asked when they become pregnant is, “Who is your pediatrician?”  Your pediatric primary care provider is so important that they almost a part of your family – they…

Learn More

June 4, 2019

Summer Camps and Immunizations for Children with Duchenne

As the school year wraps up, many families are beginning to prepare for summer activities. We have recently received questions about vaccination requirements, especially if parents are planning to send their child to camp. Specifically,…

Learn More

May 20, 2019

PPMD’s Certified Duchenne Care Center Program – 2018 Impact & Progress

For 25 years, care has been at the heart of everything PPMD does. We strive to ensure that people living with Duchenne are living longer, stronger lives, by helping you access expert healthcare providers, a…

Learn More

April 26, 2019

PPMD Announces Univ. of Utah Health & Intermountain Primary Children’s as 25th Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named University of Utah Health (U of U Health) and the Intermountain Primary Children’s Hospital in Salt Lake City, Utah the 25th Certified Duchenne Care Center (CDCC). This expanding…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More

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…

Learn More