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 meeting Monika Swinarska, the new and wonderful PM&R physician who will direct the pediatric and adult neuromuscular center at the University of new Mexico Health Sciences Center, as well as her team, nurse coordinators Eddie Baldlinger and Carmellla Martinez.
With an intimate group of 20 parents, we were delighted to be able to start with introductions all around. As many of the parents had not met Dr. Swinarska, and most did not know each other, this was a wonderful start to the day! I covered cardiac and endocrine care (growth, puberty and bone health) (download PDF).
Dr. Swinarska reviewed steroids, their history, what we know about steroids and the current recommendations for taking them (download):
Oren Kupfer joined us to discuss pulmonary care (download):
Dr. Sue Apkon from Seattle Children’s talked about all of the exciting research going on in Duchenne (download), including:
Leslie Vogel, the amazing Seattle Children’s PT, had parents running through the paces of stretching and bracing (download):
Jen Ely, genetic counselor with PPMD's DuchenneConnect Registry, explained all about deletions, duplication, stop codons, and carriers (download):
Throughout the day the audience heard from our incredible list of industry partners developing potential therapies for Duchenne. Participants included:
Thanks to all of the families and presenters for spending their Saturday with us. We had a wonderful time, meeting new faces and seeing some that we love but don't get to see often enough.
About PPMD's Every Single One Tour
Combining each of the pillars that make up PPMD’s mission, the Every Single One Tour brings updates on research, advocacy, and care to families across the country, featuring a roster of leading experts in the Duchenne space. This is also an opportunity to connect with local families and, when possible, explore your area Certified Duchenne Care Center. As always, each meeting is free with breakfast and lunch provided. Kids are also welcome to attend and participate in PPMD’s Kids Track.
* Specific dates and locations for our 2018 visits will be added to our website over the coming weeks.