Kathi Kinnett's Blog (100)

PPMD & NIH to Host “Contractures in Duchenne and Other Neuromuscular Conditions”


PPMD and NIH are convening a group of more than 60 researchers, post-docs, neurologists, surgeons, industry partners, physiatrists, and physical therapists on April 19-20, 2018, who have experience and expertise in the development, prevention, and management of contractures to discuss these critical issues. 

We just don’t know very much about…


Added by Kathi Kinnett on April 19, 2018 at 9:30am — No Comments

Why is Bone Health Important?

Just like a house needs a stable frame, your body needs a stable skeleton. Bone health is important for anyone living with Duchenne, whether walking (ambulatory) or those no longer able to walk without the assistance of a wheelchair or scooter (non-ambulatory). People of all ages living with Duchenne have weak bones, especially if they are taking steroids…


Added by Kathi Kinnett on April 11, 2018 at 9:30am — No Comments

Center Directors Publish Collective Statement Regarding Patient Access to Approved Therapies

PPMD is proud to announce the publication of a collective statement regarding patient access to approved therapies from the center directors of our Certified Duchenne Care Centers.

There are many ongoing treatment trials for Duchenne and of…


Added by Kathi Kinnett on March 27, 2018 at 9:00am — No Comments

Duchenne Pulmonary Awareness Video Series

Pulmonary management in Duchenne (all of the care involved with breathing and coughing) can be confusing and difficult to understand. There are many terms, abbreviations, and procedures that all sound very complicated. PPMD – with support from Santhera Pharmaceuticals and input from a panel of parents,…


Added by Kathi Kinnett on March 13, 2018 at 9:30am — No Comments

From our Hearts to Yours — Updates in Duchenne Cardiac Care Guidelines

Care for the heart has long been a priority for PPMD. Over the past several years, PPMD’s Cardiac Initiative has given rise to:


Added by Kathi Kinnett on February 7, 2018 at 1:31pm — No Comments

Updated Care Consideration Guidelines for Duchenne Published

PPMD is thrilled to announce that after many years in development, the Centers for Disease Control (CDC) has published updated Care Considerations for Duchenne in The Lancet Neurology. These articles are also now…


Added by Kathi Kinnett on January 24, 2018 at 10:30am — No Comments

PPMD's Certified Duchenne Care Center Program – 2017 Impact & Progress

PPMD's Certified Duchenne Care Center (CDCC) Program was developed to make comprehensive Duchenne care and services, provided in agreement with the…


Added by Kathi Kinnett on January 8, 2018 at 4:30pm — 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 pain/discomfort, cramps and diarrhea. Thank goodness they usually have…


Added by Kathi Kinnett on December 21, 2017 at 10:30am — No Comments

Making Duchenne Care and Clinical Trials Better – Globally

An email from a mom in war-torn Baghdad who doesn’t know how to even start to seek care for her son with a new diagnosis.

A mom in India who can’t find a provider who will give her son steroids, but instead say stem cells will cure him.

A physical therapy student in Turkey who wants to learn all she can…


Added by Kathi Kinnett on December 5, 2017 at 11:55am — No Comments

PPMD’s #EverySingleOne Tour: Albuquerque, NM

On November 4, PPMD had the pleasure of working with the parents and providers of New Mexico to present our final Every Single One Tour stop of 2017 (click here for a preview of our 2018 Tour schedule).  We had the pleasure of…


Added by Kathi Kinnett on November 20, 2017 at 9:00pm — No Comments

Steroid Dosing & Duchenne: FAQs

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 in mind, I reached out for input from Dr. Doug Biggar and Dr. Anne…


Added by Kathi Kinnett on October 5, 2017 at 3:00pm — No Comments

In an Emergency – Consider a Medical ID

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 cell phone number. 


For some people, having a medical ID that…


Added by Kathi Kinnett on September 22, 2017 at 7:23pm — No Comments

2017/2018 Flu Vaccination Recommendations

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 2005 study done by…


Added by Kathi Kinnett on September 18, 2017 at 10:30am — No Comments

PPMD’s #EverySingleOne Tour: Charleston, WV

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 Charleston. …


Added by Kathi Kinnett on September 13, 2017 at 4:30pm — No Comments

Care Complications – Going Beyond the More Common Elements of Care in Duchenne

Every year at PPMD's Annual Connect Conference, we try to put together the best topics, with the most informed speakers, to address elements of care at…


Added by Kathi Kinnett on August 28, 2017 at 11:30am — No Comments

PPMD's Bone Health Workshop Published

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 confusing and often neglected aspect of …


Added by Kathi Kinnett on August 14, 2017 at 10:00pm — No Comments

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 been published.…


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!


If you…


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. 

Life is hard, and parts of…


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 this point has not been painless for the families…


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

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