by: Parent Project Muscular Dystrophy
PPMD is excited to kick off our 2019 End Duchenne Tour in Las Vegas this weekend!
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.
Since our organization was founded in 1994, connecting the Duchenne community with leading experts has been a top priority.
PPMD’s Founding President and CEO, Pat Furlong, believes these meetings benefit everyone who attends:
“When my sons were diagnosed with Duchenne over 30 years ago, there was little information and few families I could connect with. Today, we have an incredible tour that continues to bring a number of scientists, clinicians, pharmaceutical companies, and family practitioners together with families in a one-day meeting that is geared specifically for the community hosting us. The response to PPMD’s End Duchenne Tour over the years has been tremendous and we will continue to expand our tour map, bringing the top minds in Duchenne to families across the country. We are especially thankful to our industry partners who believe in the benefits of this kind of connection, and travel with us from tour stop to tour stop. Because of their support, we are able to offer these robust meetings at no cost to the families who attend.”
Upcoming stops for the 2019 End Duchenne Tour include:
- Las Vegas, Nevada – February 2, 2019
- Omaha, Nebraska – March 30, 2019
- Portland, Maine – April 27, 2019
- Wilmington, Delaware – Fall 2019
- Memphis, Tennessee – Fall 2019
*Registration opens 1-2 months prior to each event. Make sure you are signed up to receive emails from PPMD to be notified when registration opens.
Sponsors for the 2019 End Duchenne Tour include:
- Catabasis
- Italfarmaco
- NS Pharma
- Pfizer
- PTC
- Roche / Genentech
- Santhera
- Sarepta
- Solid Biosciences
- Wave Life Sciences
About PPMD’s End Duchenne Tour
As mentioned above, the End Duchenne Tour brings updates on research, advocacy, and care. When possible, clinicians from one of PPMD’s Certified Duchenne Care Centers will participate in a tour stop. If there is not a certified clinic nearby, the specialty teams from local clinics share information. Speakers also encourage attendees to consider participating in local events geared towards friends and family affected by Duchenne, including the Race to End Duchenne (the organization’s prestigious endurance program) and PPMD’s Connect (the official volunteer, parent-led outreach program of PPMD).
The key is for families to connect, according to PPMD’s Pat Furlong: “When a family faces a Duchenne diagnosis, you feel alone, isolated. PPMD understands the incredible value in connecting with a community that gets you, that gets what your family is going through. The End Duchenne Tour, we hope, is that connection for our families. Through these meetings, they are finding families also dealing with a Duchenne diagnosis – families essentially in their backyard.”
Not only are meetings free, with breakfast and lunch provided, but kids are also welcome to attend and participate in PPMD’s Kids Track.
PPMD will also offer virtual tour stops later in the year, giving families in more remote parts of the country the ability to engage in one of these day-long meetings, but from the comfort of their home or office computer. Participants interact with speakers and each other online, in real time. Dates and locations for virtual tour stops in 2019 are still being finalized.
