February 15, 2018 / Community

End Duchenne Tour Recap: Morristown, NJ

Parent Project Muscular Dystrophy by: Parent Project Muscular Dystrophy

PPMD kicked off the 2018 End Duchenne Tour with a stop in our very own backyard – Goryeb Children’s Hospital in Morristown, New Jersey! PPMD was extremely grateful to partner with Michael’s Cause, Pietro’s Fight, Powers Promise, and Ryan’s Quest on this event. There is strength in numbers, and we feel that together we can do amazing things in 2018 and beyond. The team from Goryeb were incredible to work with and were gracious hosts to over 25 families and several industry partners and clinicians.

 

Care Highlights

Dr. Jahannaz Dastgir, MD (Dr. Naz) from Goryeb Children’s provided a wonderful overview of the clinic and team she leads. Dr. Naz stressed the importance of having the patient and family at the center of decision making. This was a great opportunity for NJ/NY families to learn about this emerging clinic since many attendees travel long distances for care.

Sub-specialty Topics

PPMD brought in three outside speakers from other institutions to cover sub-specialty topics. They included:

Physical Therapy, Stretching Routines, and Resources for Families and PTs

  • Speaker: Dr. Laura Case (Duke)
  • Take home: A number of resources exist on the PPMD website and are available for both families and PTs.

Psychosocial Issues in Duchenne

  • Speaker: Dr. James Poysky (Katy Child Psychology Associates)
  • Take home: There is an increased risk in Duchenne for issues like ADHD, OCD, and depression. These issues are often overlooked and should be addressed with your doctor.
  • Download Presentation Slides

Cardiology Standards of Care

  • Speaker: Dr. Kimberly Lin (CHOP)
  • Take home: Now that we are better caring for lungs, we need to be ready for a detailed and diligent approach for caring for the heart.
  • Contact Info: Dr. Lin offered her contact info after a few had asked for it.
    • Kimberly Lin, MD
      The Cardiac Center at Children’s Hospital of Philadelphia
      Assistant Professor
      Pediatric Cardiology, Cardiomyopathy and Heart Transplantation
      215-590-6051/267-426-5700
      heart.chop.edu
  • Download Presentation Slides

 

Industry Updates

Several companies presented on their products, providing trial updates:

 

PPMD

Research Update

PPMD’s Founding President and CEO, Pat Furlong, began the day with an overview of research strategies and how clinical trials work. She then provided an explanation of the current trials happening in Duchenne.

Genetics, DuchenneConnect & Your Family

Jen Ely, one of PPMD’s Certified Genetic Counselors who leads PPMD’s Decode Duchenne Program, presented on genetics and PPMD’s DuchenneConnect Registry.

 

Race to End Duchenne

Crossing the finish line of the Walt Disney World Marathon while pushing his son Michael was Mike Gaglianone’s best moment as a member of the Race to End Duchenne team. Mike and his family have participated as part of the Race to End Duchenne team since it began in 2004 and have raised tens of thousands of dollars to fund PPMD’s mission throughout the years. Mike shared his experiences with attendees at the Morristown End Duchenne Tour and challenged them to sign up for a race and experience the power of helping their loved ones living with Duchenne by running or walking in a race this year. Whether it’s the Rock ‘n’ Roll Philadelphia Half Marathon, 10K & 5K that Mike and others are doing on September 15 and 16, or another race on our calendar, consider joining our team as we go the distance to end Duchenne in races across the country this year.

PPMD FACES of New Jersey

PPMD FACES Coordinators, Jen Garofalo and Suzanne Gaglianone, spoke about gathering NJ families on a more regular basis and coming up with two activities a year. If you are not linked into the NJ group please contact PPMD’s Nicole Herring who can connect you with Jen and Suzanne.

About the End Duchenne Tour

In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD has launched a multi-year community experience called the End Duchenne Tour. Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to cities across the country, featuring a roster of leading experts in the Duchenne space.

You have told us what topics are the most important to you and we have listened, using your feedback to inform our robust agenda at each tour stop. 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.

Upcoming 2018 Schedule*:

  • St. Paul, MN – April 28, 2018
  • Birmingham, AL – June 2, 2018
  • Billings, MT – Remote
  • Dallas, TX – October 13, 2018
  • San Francisco Bay Area, CA – November 3, 2018
  • Cincinnati, OH – November 17, 2018

PPMD will also be holding our Annual Conference in Scottsdale, AZ (June 28 – July 1).

*Registration typically opens 1-2 months prior to each event. Visit EndDuchenne.org/Tour for more details and make sure you are signed up to receive emails from PPMD to be notified when registration opens.

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