Steroid dosing in Duchenne can be a confusing topic – what is enough, what is too much, why weekend doses are higher. With these frequently asked questions I’ve heard from the community…Continue
Added by Kathi Kinnett on October 5, 2017 at 3:00pm — No Comments
Let’s say that Joe has Duchenne. If Joe breaks his arm and the EMT comes before Joe’s parent arrives, Joe may not remember to tell the EMT that: 1) he has Duchenne, 2) he is on daily steroids 3) he is allergic to penicillin and, in that painful scary moment, he may or may not remember his parent’s…Continue
Added by Kathi Kinnett on September 22, 2017 at 7:23pm — No Comments
Everyone, six months of age and older, needs to be vaccinated against influenza (flu) by the end of October, if possible. Protecting people living with Duchenne is especially important. A …Continue
Added by Kathi Kinnett on September 18, 2017 at 10:30am — No Comments
We kicked off our fall Every Single One Tour stops in West Virginia this past weekend! We appreciate all of the families, speakers, and volunteers that spent the day with us in…Continue
Added by Kathi Kinnett on September 13, 2017 at 4:30pm — No Comments
Added by Kathi Kinnett on August 28, 2017 at 11:30am — No Comments
May 12-13, 2016, PPMD convened a workshop of 48 opinion leaders, research experts and clinicians from the US and Canada, on the subject of Duchenne and bone biology. Bone health has long been a…Continue
Added by Kathi Kinnett on August 14, 2017 at 10:00pm — No Comments
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