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 patients. Many of the ENMC workshops address Duchenne specific issues. PPMD has…Continue
Added by Kathi Kinnett on March 17, 2017 at 4:00pm — 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 MRI as the gold standard for cardiac surveillance and…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 the clinic actually knew anything about…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 2005 study done by the…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.
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.
The presentation can be…Continue
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 changing the diagnostic odyssey for people with Duchenne…it is a theme…
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 Muscular Dystrophy Foundation of South Africa (MDSA) has…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 camaraderie that exists when people gather in a single space with a single…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 breaths in, fully expand the lungs, hold full breaths, breath…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 usual, may start to act a little odd, and slowly develops…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. It has been stated that bisphosphonates (medications that help…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 surgery. The questions of whether this is a safe surgical option and…Continue
Added by Kathi Kinnett on January 15, 2016 at 9:30am — No Comments
In 2012, PPMD hosted a meeting with NHLBI entitled Contemporary Issues in Duchenne Cardiology. One of the small groups resulting from that meeting – the Animal Model Small Group – was tasked with developing/updating the …Continue
Added by Kathi Kinnett on January 13, 2016 at 1:00pm — No Comments
Dysphagia, or difficulty swallowing, effects many patients with Duchenne. Complaints of "something stuck in my throat" are not uncommon. Symptoms may progress to difficulty swallowing saliva, coughing during and after meals, increased meal duration, difficulty starting swallowing, loss…Continue
Added by Kathi Kinnett on January 8, 2016 at 9:00am — No Comments
It’s fall, so it must be time for my annual mantra – Get Your Flu Vaccine!!
Everyone, 6 months of age and older, needs to be vaccinated against influenza, and protecting children with neuromuscular disease is especially important. A…Continue
Added by Kathi Kinnett on October 16, 2015 at 1:00pm — No Comments
The neuromuscular group at Great Ormond Street Hospital, London UK, have recently published their study comparing the effectiveness of echocardiogram with cardiac MRI in the assessment Duchenne cardiomyopathy in patients preparing for surgical…Continue
Added by Kathi Kinnett on September 29, 2015 at 3:00pm — No Comments
Right now, Annie Kennedy and I are sitting in a room, in Atlanta at the Centers for Disease Control and Prevention (CDC), with a group of experts in Duchenne from around the world. It is the culmination of 2-year effort and we are delighted that…
Added by Kathi Kinnett on September 25, 2015 at 3:34pm — No Comments