PPMD was excited to head to the Midwest for the second stop on the 2018 End Duchenne Tour. The event took place at Western Michigan University in Grand Rapids, Michigan, in partnership with Team Joseph, Little Hercules Foundations, and Noah’s Feat. There were close to 100 people in attendance, including families, PPMD staff, members of industry, and healthcare providers.
There is something so wonderful about folks from the Midwest…they are compassionate, friendly, “roll up your sleeves”, kind of people. The PPMD team felt so welcomed by the families.
PPMD & Community Partners
The day began with introductions around the room so we all had a chance to know a bit about everyone attending. I provided an overview of PPMD and our mission, describing our work within four pillars – Research, Care, Advocacy, and Education – and how the day’s agenda would touch on each of these pillars.
I then introduced our foundation partners for the Grand Rapids Tour, who provided information about the inspiring work they do:
The Therapeutic Pipeline
PPMD’s Founding President and CEO, Pat Furlong, provided an overview of current research strategies in Duchenne and a look at the therapeutic pipeline.
Genetics, DuchenneConnect & Your Family
Ann Martin, PPMD’s Certified Genetic Counselors who leads PPMD’s DuchenneConnect Registry, discussed the importance of genetic testing and the array of programs PPMD offers through the registry.
Race to End Duchenne
Matt Dague – uncle of a young man with a Duchenne and a longtime participant in our endurance program, spoke about Race to End Duchenne and the upcoming Metro Health Grand Rapids Marathon on October 20 & 21. Matt encouraged attendees and their family and friends to join him at this race - which features a Full Marathon, Half Marathon, Full Marathon Relay, 10K and 5K – and raise funds and awareness to help end Duchenne.
PPMD's Connect Michigan
We also heard from our local volunteer PPMD Connect Michigan Coordinator – Janelle Lundy – who is looking for other moms and dads to join and help lead the Connect MI group for support and social connection. If you are not linked into the MI group please contact PPMD's Nicole Herring who can connect you with Janelle.
Jonathan Finder, MD spoke about the standards of care for pulmonary (lung) function.
Katherine Gambetta, MD (Lurie Children’s) discussed cardiology standards of care. She also discussed the benefits of steroids on the heart. Finally, she went over emerging devices– implantable cardioverter defibrillators (ICD) – if ejection fracture is <35%.
Laurey Brown, PT (Lurie Children‘s) discussed the stages of Duchenne based on ambulation. She went over the fundamentals of stretching with the goal of improving function, well-being, and prolong ambulation. She talked about letting children pace themselves. She stressed that fatigue is real; encouraged the incorporation of balance and coordination skills; explained how aquatic exercises are wonderful for Duchenne; and explained that in case of fractures, families should turn to the new care guidelines.
Several companies presented on their products, providing trial updates:
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*:
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.