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Kathi Kinnett
  • Female
  • Cincinnati, OH
  • United States
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Kathi Kinnett's Discussions

If you had a chance to ask researchers, providers or industry any question at all about clinical trials, what would it be?

Started this discussion. Last reply by Tina Tsonis Oct 18, 2013. 25 Replies

If you had a chance to ask researchers, providers or industry any question at all about…Continue

Tags: questions, conference, Staff, Duchenne, researchers

 

Kathi Kinnett, Vice President, Clinical Care

Profile Information

About me:
Sr. Vice President, Clinical Care
i have been engaged with the Duchenne community for more than 20 years. I worked as a Pediatric Nurse Practioner at Cincinnati Children's Hospital with their neuromuscular team before joining PPMD. I am thrilled to be a part of this amazing communtiy and will dedicate my efforts to making sure that you and/your child are receiveing the best possible care.
About my family:
i have 2 beautiful grown daughters, 2 amazing son-in-laws, and 3 grandchildren that i treasure <3
City:
Cincinnati
State:
Ohio

Kathi Kinnett's Blog

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

Posted on April 19, 2018 at 9:30am 0 Comments

 

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…

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Why is Bone Health Important?

Posted on April 11, 2018 at 9:30am 0 Comments

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…

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Center Directors Publish Collective Statement Regarding Patient Access to Approved Therapies

Posted on March 27, 2018 at 9:00am 0 Comments

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…

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Duchenne Pulmonary Awareness Video Series

Posted on March 13, 2018 at 9:30am 0 Comments

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,…

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Latest Activity


Staff
Kathi Kinnett is attending PPMD's event

For Clinicians: PPMD Duchenne Clinician Care Conference at Sanibel, FL

January 24, 2018 to January 26, 2018
This year, PPMD will be hosting our first Duchenne Clinician Conference, January 24-26, 2018 at the Marriott Harbor in Sanibel, FL. Registration is now open.This conference will provide up to date clinical education, resources, materials and networking, supporting your ability to provide the very best care to your patients and families living with Duchenne.Our robust agenda will cover comprehensive care and…See More
Oct 17, 2017
brian phillip nicholoff favorited Kathi Kinnett's blog post PJ Nicholoff Steroid Protocol Published
Oct 16, 2017

Staff
Kathi Kinnett posted a blog post

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 Connolly, who contributed to the…See More
Oct 5, 2017
Mariana Mitreva favorited Kathi Kinnett's blog post Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"
Oct 4, 2017

Staff
Kathi Kinnett posted a blog post

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 includes information for…See More
Sep 22, 2017

Staff
Kathi Kinnett posted a blog post

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 the CDC found that children with neuromuscular…See More
Sep 18, 2017

Staff
Kathi Kinnett posted a blog post

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. Psychosocial Issues in Duchenne James Poysky, PhD, discussed some of the psychological issues in…See More
Sep 13, 2017

Staff
Kathi Kinnett commented on Kathi Kinnett's blog post Important New Duchenne Steroid Protocol: Download the "PJ Nicholoff Steroid Protocol"
"Tia - a stress dose of steroids, if your son had been using daily steroids for more than 2 weeks, would absolutely have been advised.  However, this sounds like the sysmptoms of a fat embolism.when-parents-are-informed.  When patients have…"
Sep 11, 2017

Staff
Kathi Kinnett posted a blog post

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 different ages. This year,…See More
Aug 28, 2017

Staff
Kathi Kinnett posted a blog post

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 …See More
Aug 14, 2017

Staff
Kathi Kinnett posted blog posts
Jul 17, 2017

Staff
Kathi Kinnett posted a blog post

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 life are really, really tough. I can’t imagine that one person reading this blog has not had…See More
May 25, 2017

Staff
Kathi Kinnett posted a blog post

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 involved. As we have watched clinical trials…See More
Apr 20, 2017
Brid Murray favorited Kathi Kinnett's blog post Duchenne Carrier Study at Nationwide Children’s Hospital
Feb 24, 2017

Staff
Kathi Kinnett's blog post was featured

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 a ‘short course,’ most…See More
Jan 4, 2017

Staff
Kathi Kinnett posted a blog post

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 a ‘short course,’ most…See More
Jan 4, 2017

Comment Wall (4 comments)

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At 6:20pm on April 17, 2014, kimmy watters said…

  hi kathi its  the new drug  i have issue with spelling  eleplrin , that the fda has not approve yet.  my question is that  drug will it  help the boys that are in wheel chair. kimmy

At 6:26pm on April 16, 2014, kimmy watters said…

 hi kathi my name is kimmy watters thank you for  what  you do for parent project,. with this new drug will it  our boys who are now in wheelchair. kimmy

At 11:26pm on May 7, 2012, Thomas Hoel said…
So, were you a human GPS for Pat on the walk through the canyon?  Proud of you guys.  I'll bet you two were like Thelma and Louise, light. What an awsome accomplishmemt!!
At 10:52pm on April 4, 2012, Thomas Hoel said…
Glad to have you "officially" on board at PPMD Kathi! Your knowlege, experience, empathy and passion can help so many more families now.
 
 
 

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