In April 2016, PPMD convened a workshop to assess the measures used to evaluate pulmonary strength, air flow and lung volumes. Thanks to the tireless effort of Dr. Jonathan Finder, this summary has now…Continue
Added by Kathi Kinnett on July 17, 2017 at 9:35am — No Comments
Sadly, I never had the honor of meeting PJ Nicholoff, but I’ve met his parents. And if PJ was anything like his father, Brian, he was vibrant, compassionate, caring, engaged and tenacious!
Added by Kathi Kinnett on July 16, 2017 at 8:30pm — No Comments
Added by Kathi Kinnett on May 25, 2017 at 11:00am — No Comments
The Duchenne community has waited 20 years to be where we are. We are reminded daily of how far we have come, how the landscape has changed, how there are close to 20 clinical trials to choose from. While these changes within are landscape bring us to a hopeful time in Duchenne, the journey to…Continue
Added by Kathi Kinnett on April 20, 2017 at 12:30pm — No Comments
The European Neuromuscular Center (ENMC) is a global organization that gathers expertise from around the world to address many issues and concerns of, and advance research and treatments for, neuromuscular…Continue
Added by Kathi Kinnett on March 17, 2017 at 4:00pm — No Comments
Viral gastrointestinal (GI) viruses are no fun for anyone, but they are especially worrisome for a person living with Duchenne muscular dystrophy. GI viruses affect the GI track – the stomach and intestine (i.e., ‘gut’) – resulting in abdominal pain/discomfort, nausea, vomiting, intestinal…Continue
Added by Kathi Kinnett on January 4, 2017 at 10:30am — No Comments
When PPMD convened the Contemporary Issues in Duchenne Cardiology meeting with National Heart, Lung, and Blood Institute (NHLBI) in July 2014, there were several recommendations.
The strongest recommendations included the use of cardiac…Continue
Added by Kathi Kinnett on December 8, 2016 at 4:00pm — No Comments
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 did not know who was providing care, the level of care being provided or whether anyone at…Continue
Added by Kathi Kinnett on December 8, 2016 at 3:02pm — No Comments
Frequently, I get calls from mothers/sisters/aunts of people living with Duchenne about issues related to being a carrier of Duchenne:
Everyone, six months of age and older, needs to be vaccinated against influenza (flu), and protecting people living with with Duchenne is especially important. A …Continue
In an effort to answer some of the questions that have arisen with the potential FDA approval of deflazacort in the U.S., PPMD has worked with both Masters and Marathon to put together the resource below, which we hope will provide clarity.…Continue
Added by Kathi Kinnett on October 31, 2016 at 2:00pm — No Comments
This presentation, "The Emergent and Acute Management of Patients Living with Duchenne Muscular Dystrophy," was produced in an effort to educate clinicians in the care of individuals and families living with Duchenne.
Added by Kathi Kinnett on October 19, 2016 at 3:30pm — No Comments
The global Duchenne community will come together on September 7 for World Duchenne Awareness Day. This year a theme was chosen that is not only critical to…
Added by Kathi Kinnett on September 1, 2016 at 12:30pm — No Comments
As we quickly approach World Duchenne Awareness Day, on September 7, I am pleased to provide details on our team’s ongoing trip to South Africa.
Over the past 10 years, the…Continue
Added by Kathi Kinnett on August 31, 2016 at 10:30am — No Comments
With a successful ESO tour stop in Baltimore under our belts, PPMD visited Salt Lake City this past weekend! There’s a special sense of…Continue
Added by Kathi Kinnett on May 26, 2016 at 3:00pm — No Comments
Added by Kathi Kinnett on May 12, 2016 at 9:00am — No Comments
We are well aware that changes in pulmonary function occur as Duchenne progresses. In Duchenne, respiratory muscles (including the diaphragm) weaken and it becomes more difficult to take full…Continue
Added by Kathi Kinnett on March 10, 2016 at 11:30am — No Comments
It is a sadly familiar story: the parent moves the child, the child gets bumped/dropped, the child complains that something hurts (but doesn't really hurt so badly that a broken bone is suspected), and everyone goes on about their business.
Then, the child may become sleepier than…Continue
Added by Kathi Kinnett on February 19, 2016 at 10:00am — No Comments
Medication-related osteonecrosis of the jaw (MRONJ), or osteonecrosis of the jaw (ONJ), is a condition that results when the bones of the jaw are exposed and then do not heal – generally when a tooth is removed.…Continue
Added by Kathi Kinnett on February 11, 2016 at 11:30am — No Comments
The removal of “wisdom teeth” (third molars) is one of the most common procedures performed by oral and maxillofacial surgeons. While it is common, it is considered…Continue
Added by Kathi Kinnett on January 15, 2016 at 9:30am — No Comments