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Kathi Kinnett's Blog (85)

Pulmonary Outcomes Workshop Summary

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…

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Added by Kathi Kinnett on July 17, 2017 at 9:35am — No Comments

PJ Nicholoff Steroid Protocol Published

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!

 …

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Added by Kathi Kinnett on July 16, 2017 at 8:30pm — No Comments

Finding Your Light: Fighting Depression in Duchenne

PPMD's Kathi Kinnett, MSN, CNP worked with Molly Colvin, PhD, Neuropsychologist at Massachusetts General Hospital and Ginny Ward, an amazing mom living in Colorado with her children, including John, a young man living with Duchenne, to develop this important material. …

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Added by Kathi Kinnett on May 25, 2017 at 11:00am — No Comments

PPMD Convenes Meeting to Explore the Burden of Pediatric Clinical Trials

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…

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Added by Kathi Kinnett on April 20, 2017 at 12:30pm — No Comments

ENMC Workshop Report: Airway Clearance Techniques in Neuromuscular Disorders

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…

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Added by Kathi Kinnett on March 17, 2017 at 4:00pm — No Comments

What You Need to Know about Duchenne & Viral Gastroenteritis (That Horrible Stomach Bug!)

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…

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Added by Kathi Kinnett on January 4, 2017 at 10:30am — No Comments

New Paper Further Validates Need for Annual Cardiac MRI Surveillance in Duchenne

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…

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Added by Kathi Kinnett on December 8, 2016 at 4:00pm — No Comments

How PPMD’s Certified Duchenne Care Centers Are Improving Quality & Access to Care

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…

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Added by Kathi Kinnett on December 8, 2016 at 3:02pm — No Comments

Duchenne Carrier Study at Nationwide Children’s Hospital

Frequently, I get calls from mothers/sisters/aunts of people living with Duchenne about issues related to being a carrier of Duchenne:



  • Should they have carrier…
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Added by Kathi Kinnett on November 14, 2016 at 11:00am — 2 Comments

2016 Flu Vaccination Recommendations

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 …

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Added by Kathi Kinnett on November 9, 2016 at 2:30pm — 2 Comments

Deflazacort Access: Navigating Potential Changes to Your Prescription

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.…

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Added by Kathi Kinnett on October 31, 2016 at 2:00pm — No Comments

[FOR CLINICIANS] The Emergent & Acute Management of Patients Living with Duchenne Muscular Dystrophy

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…

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Added by Kathi Kinnett on October 19, 2016 at 3:30pm — No Comments

The Importance of Early Diagnosis: Ensuring Quality Care



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…

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Added by Kathi Kinnett on September 1, 2016 at 12:30pm — No Comments

PPMD Visits South Africa to Help Spread Global Knowledge of Duchenne Care

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…

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Added by Kathi Kinnett on August 31, 2016 at 10:30am — No Comments

PPMD’s #EverySingleOne Tour: Salt Lake City

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…

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Added by Kathi Kinnett on May 26, 2016 at 3:00pm — No Comments

PPMD Brings Together Experts to Assess Steroid Effects on Bone Health in Duchenne

Bone health has long been a confusing and often neglected aspect of Duchenne care. There is very…

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Added by Kathi Kinnett on May 12, 2016 at 9:00am — No Comments

The Importance of Every Single Breath—PPMD to Host Pulmonary Outcomes Meeting

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…

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Added by Kathi Kinnett on March 10, 2016 at 11:30am — No Comments

Recognizing the Symptoms of Fat Embolism Syndrome (FES)

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…

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Added by Kathi Kinnett on February 19, 2016 at 10:00am — No Comments

Duchenne Dental Dilemmas: Bisphosphonates & Osteonecrosis of the Jaw

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.…

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Added by Kathi Kinnett on February 11, 2016 at 11:30am — No Comments

Wisdom teeth & Duchenne

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…

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Added by Kathi Kinnett on January 15, 2016 at 9:30am — No Comments

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