PPMD celebrates Kathi Kinnett, MSN, APRN, a dedicated member of our incredible Care Team for 10 years, as she announces her retirement at the end of this month.

Kathi joined PPMD in 2012 after years of experience at Cincinnati Children’s Hospital’s neuromuscular center. With the goal of giving as many patients as possible access to comprehensive Duchenne care and services, she developed PPMD’s Certified Duchenne Care Center (CDCC) Program. In addition, she has worked closely with the community to address medical issues in real time, to be responsive to needs for education and resources, and convened meetings and workshops to address numerous gaps in knowledge, care, and research.

Thank you, Kathi, for your outstanding and tireless contributions to improve care for people living with Duchenne. Thank you for building and fostering PPMD’s excellent Care Team so that we can continue to expand upon the foundation you built, using your example as we continue the critical programs and work you have established over the past decade.

Our community is so proud of you and we are eternally grateful for all you have done to help us end Duchenne. We wish you all the best in this next phase of your life!

Help us thank Kathi for her years of contributions to the community, with a comment or a photo using the hashtag #PPMDKathiCares!

PPMD’s Pat Furlong reflects on Kathi’s contributions to the Duchenne community:

Kathi:

Many years ago, we met at Cincinnati Children’s Hospital. You were seeing families. I observed and watched with awe. You cared—genuinely, full-bodied, full-spirited. You listened. You loved.  You touched others with your easy humanity. I saw it in the faces of every adult, child, and moody teen you interacted with. You answered questions with a kindness and sensitivity that respected the fears and hopes of each family. You were the connector: engaging other colleagues to ensure families were in the best of hands.

To borrow a line from a screenplay written by the great Nora Ephron: “I knew. The way you know a good melon.” (When Harry Met Sally)

PPMD needed you; I needed you. We needed you because we believed you could develop a model that could expand the idea of delivering optimal care to every family. You graciously accepted. You not only rose to the challenge, but you exceeded it at every turn. If policy can be a work of art, the Certified Duchenne Care Center (CDCC) Program—a network of 28 CDCCs and growing—is O’Keefe, Rembrandt, Rodin, and so much more.

You lead with your heart and so it was a natural fit for you to devote yourself to the work around our cardiology concerns for our community. “Is the heart built to last if treatments protect skeletal muscle?” we asked and wondered and you took the lead on answering. You organized and led meetings focused on characterizing the heart, connected pediatric and adult cardiologists to work together, and developed focused meetings to enable progress. You set a vast machinery in motion, one that continues to evolve and attract interest and collaboration from researchers and industry.

You shine brightest working with people. “What can we do to understand the impact Duchenne has on the quality of life of our families? How do we continue to put people first within this confusing labyrinth of disease?” You answered again. You led this ongoing effort for us and expanded the terrain of our understanding to consider how specific mutations impact the expression of isoforms in the brain and associated behaviors. You’ve carried the baton forward in working on an algorithm around how to utilize medicines to support these individuals and their families.

Parents have you on speed dial, on weekends and holidays, in emergencies. They rely on your ability to connect them to relevant healthcare professionals. They know you’ll pick up, respond, engage even if it’s just to share in great news or a small victory that, for a Duchenne family, can feel as big as the moon landing. They know they can count on you to hold space for them in moments of brilliance and despair.

And they are not the only ones. For all of us, you are the go-to, the person to call, the amazingly kind friend ready with a smile, a listening ear, a thoughtful insight that changes everything.  

For me personally, I love you dearly. I love that we dream the same dream, to end Duchenne.  And I have great respect for who you are and how you lovingly navigate the difficult path that is Duchenne, at the same time, carrying the weight of the loss of your person, your go-to, your Doug.

Thank you feels so soft in light of how much you lifted this community and all of us at PPMD. It is what we have to offer, so thank you, thank you, thank you. It is hard to say goodbye to what feels like a life’s worth of memories and the gifts you gave to all of us, so maybe, let’s not. Instead, let’s say “until we meet again.” And until that time, know that you will stay at the top of my speed-dial.

May this time ahead be full of sunshine, love, and the kind of magic you made us all feel every day. 

Contact PPMD

We know many of you have come to rely on Kathi for her knowledge, compassion, and responsiveness to questions. We are grateful that Kathi leaves PPMD with an outstanding Care Team in place, who will continue to be available and responsive to your questions. Please do not hesitate to connect with PPMD’s Rachel Schrader, MS, APRN, CPNP-PC (rachel@parentprojectmd.org) or Amanda Wilkison, RN, BSN (amanda@parentprojectmd.org) for further guidance, education, and resources.