Duke University marked our final stop on PPMD’s 2016 Every Single One Tour, held on November 2. We were thrilled to be holding another tour stop at one of PPMD’s Certified Duchenne Care Centers – and excited to announce the formation of our 23rd PPMD FACES Group – FACES of North CarolinaThis was our highest attended stop to date with 125 attendees.

The dedicated and compassionate team at Duke, led by Dr. Edward Smith, strives every day to create a positive experience for the families they serve. It was clear by their participation in the entire meeting how much they care about patients and how engaged they are at working to make their clinic the best it can be. We are grateful to the entire team!

 

Recap of Presentations

 

Welcome Address and FACES Introduction

Pat Furlong began the day with a welcome and thank you to everyone for attending our final stop on PPMD's 2016 Every Single One Tour, she also introduced our newest addition to the Families Advocating Connecting Educating Supporting (FACES) network, North Carolina! Parents Allison Greiner, Lisa Littleton, and Gina Woodard are leading this newly formed group.

 

Active Clinical Trials & Research Overview

 

Dr. Eddie Smith gave an overview of clinical trials at Duke and current research strategies in the pipeline. He also explained the complexities of DNA and RNA and the various downstream targets currently in development. Dr. Charles A Gersbach, PhD and Dr. Jude Samulski, PhD provided greater context around gene transfer technologies and how they are moving through clinical development.

 

Optimal Care in Duchenne

 

Dr. Smith provided an overview of the comprehensive care model at Duke and the work they did in order to become a PPMD Certified Duchenne Care Center.

 

We then heard from the following sub specialists on aspects of the comprehensive care model: 

  • Richard M. Kravitz, MD – gave critical information on providing pulmonary care management but invasive and non invasive
  • Robert W. Benjamin, MD – gave an overview of bone health with considerations about steroid use
  • Vanessa Yount, RD, LDN – provided guidelines for establishing a proper nutrition plan for patients across the spectrum the disease

 

DuchenneConnect

 

Ann Martin (Genetic Counselor with PPMD's DuchenneConnect) discussed the importance of genetic testing and how the DuchenneConnect registry works to serve our families. She examined the different mutations in Duchenne as well as why it is important to know the mutation. Please be sure to check out DuchenneConnect.org for free genetic counseling or genetic testing through our Decode Duchenne initiative.

 

Run For Our Sons

Parent Alison Greiner gave a touching speech about getting involved in our grassroots Run for Our Sons program and the events she has put together since her son Matthew was first diagnosed. Thank you Allison for your incredible efforts!

 

Access to Specialty Care & Clinic Pathway at Duke

Jennifer Olson, RN, BSN provided a great overview of all the incredible offerings at Duke and how the team provides patients and families with an array of great resources for care and management.

 

PPMD’s Carrier Initiatives

Pat Furlong described PPMD’s new carrier initiative launched this year and how the study was being conducted and how carries could get involved in this critical effort to better understand this underserved population.

 

PPMD’s Adult Advisory Committee   

Colin Werth gave a great overview of PPMD’s Adult Advisory Committee (PAAC). Colin recently joined the PAAC and has been a wonderful ambassador for the program educating others about the goals and plans for this dynamic group of young adults.

 

Advocacy

I provided an update on our Advocacy initiatives, giving a historical perspective on Duchenne advocacy and what efforts are ongoing and ahead for the community. I also updated the group on our efforts in Benefit Risk, 21st Century Cures, and ongoing federal policy initiatives giving them a call to action to get involved!

 

Industry Every Single One Tour Sponsors on Current Clinical Trials

Throughout the day the audience heard from our INCREDIBLE list of companies developing potential therapies for Duchenne.

This all-star list included:

  • Pfizer - Katherine Beaverson
  • Marathon - Greg Aronin, Pete Sazani
  • Santhera - John Karafilidis, PharmD
  • PTC - Karen Galambos
  • Sarepta - Genevieve Laforet, MD, PhD and Mitzi Tucker

 

Thank you ALL for informing our families about your current trials. They so appreciated you being there!

 

Physical & Occupational Therapy

The day finished with a presentations about Addressing Duchenne Lifelong Therapy Needs and a great hands on presentation that included equipment show and tell led by:

  • Laura Case, PT, DPT, MS, PCS, C/NDT
  • Julie Coats, MPT
  • Robbin Newton, PT, OT

 

Laura, Julie and Robbin also led a remarkably successful joint accredited professional training day with over 30 professionals from across the state on Friday!

 

About the ESO Tour

For 22 years, PPMD has brought together families with leading experts, care providers, and industry partners through our Annual Connect ConferenceFACES meetings, and Roundtables. The Connect Conference continues to grow with more researchers, clinicians, and pharmaceutical companies joining entire families who have found the conference as an opportunity to directly interact with thought leaders and reunite with friends.

In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD launched a multi-year community experience called the Every Single [One] Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the Every Single [One] Tour brings updates on research, advocacy, and care to cities across the country.

 

View PPMD's 2017 Every Single [One] Tour schedule & find a stop near you!

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