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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 camaraderie that exists when people gather in a single space with a single goal – to learn as much as we can to lessen the burden for patients and families living with Duchenne. Last weekend, more than 60 people demonstrated that at the University of Utah. 

 

The weekend started Friday with a PT Professional Day. Laura Case (Duke University) and Leslie Vogel (Seattle Children’s Hospital) helped to educate physical therapists and PT students in the lifelong physical therapy needs of people living with Duchenne. It was an enthusiastic group, with high level, inquisitive questions. The intimate and direct conversations led to a most successful – an chocked full – day for all involved!

 

Saturday brought families with children and young adults of all ages living with Duchenne together from across Utah and Idaho to hear updates and information from care providers, industry sponsors and researchers..

 

Pat Furlong and Dr. Russell Butterfield of the Neuromuscular Clinic opened the day with introductions from everyone in the room and an overview of the day. 

 

Karin Dent, the Associate Program Director of Genetic Counseling at the University and Lauren Bogue discussed the nuances of receiving and interpreting a genetic diagnosis. Lauren discussed the availability of Decode Duchenne assistance with free genetic testing and the importance of registering with DuchenneConnect. Judging from the line at the DuchenneConnect table during lunch, the message was well received!

 

I spent some time talking about a few important, but often overlooked, areas of care. Utah has begun the application process to become a Certified Duchenne Care Center – hopefully we can include them in the CDCC network soon!

 

James Poysky  discussed some of the psychosocial issues with Duchenne, including cognitive and learning issues, and accessing needed school services. This was followed by an in-depth discussion and robust Q&A.

 

Brian Denger let the audience know that even if you only run when you are being chased, that there is room for everyone to participate in PPMD’s Run For Our Sons Program and the upcoming Big Cottonwood Marathon in Utah! There was an opportunity to sign up at lunch, and several RFOS shirts left the building!

Per Brian:

“Run for Our Sons has given me a tangible way to help support PPMD. Telling people I hope will sponsor me how far I will run gives them a sense of my commitment - no distance is too far for my sons.”

 

When people are gathered for one single cause, sometimes magic happens. Chris Jones expressed his thanks for Pat and PPMD’s caring and compassion when his son Mitchell was dying. In his honor, and hoping to prevent any other families from feeling this pain, Mitchell’s Journey presented PPMD with a $20,000 check. 

 

Although we could not see Craig McDonald, his expertise was loud and clear over Skype! Craig spoke for more than an hour describing all of the drugs in the Duchenne pipeline. Pat asked questions, Craig answered, and everyone left the room a lot more informed about clinical trials. Thank you Craig!

 

After Craig’s amazing overview of research, Dr. Russell Butterfield took a deeper dive into Duchenne care and research available to patients and families living in Utah. They are doing great things here and we are happy to have the opportunity to let families know about all of it!

 

Catherine and Matthew Lake, joined by Brian Denger, provided an overview of PPMD’s Advocacy efforts through the past 15 years. Catherine and Matt talked about family involvement in state and federal advocacy. They encouraged families to begin developing relations with their representatives to help support DMD funding and public policy efforts. Pat Furlong and Brian Denger offered ways families could have a greater impact.

At the end of the day, we addressed lifelong physical therapy needs in Duchenne. From mobility and standing equipment to bracing exercise, stretching and appropriate seating, Laura Case and Leslie Vogel did a wonderful job in rounding out the day.  

 

We are so thankful to our six industry partners who were able to support the ESO tour and most of whom were able to join us in Salt Lake City. Santhera, PTC, Sarepta, Pfizer, and Marathon all presented cutting edge information about the status of each of their respective programs.

 

Special thanks to Caren Trujillo, Missy Dixon, Deanna Dibella, Evan Pucillo, Russell Butterfield and everyone in Salt Lake City who worked so hard to make our second ESO Tour stop such a success.

PPMD will continue until we have reached #EverySingleOne!

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