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01-Feb-2019

Parent Project Muscular Dystrophy Kicks Off 2019 End Duchenne Tour in Las Vegas

HACKENSACK, N.J., Feb. 1, 2019 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will launch their 2019 End Duchenne Tour in Las Vegas, Nevada on February 2 with team members from the McKinnon Medical Group. These highly successful one-day meetings allow families to interact with fellow members of the Duchenne community, leaders in Duchenne research and drug development, and biotech and pharmaceutical industry partners.

Since the 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."

Sponsors for the 2019 End Duchenne Tour include:

  • Catabasis
  • Italfarmaco
  • NS Pharma
  • Pfizer
  • PTC
  • Roche / Genentech
  • Santhera
  • Sarepta
  • Solid Biosciences
  • Wave Life Sciences

Combining each of the pillars that make up PPMD's mission, 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 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.

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

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.

To learn more about PPMD's End Duchenne Tour, click here.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.

We invest deeply in treatments for this generation of people affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we do—and everything we have done since our founding in 1994—helps people with Duchenne live longer, stronger lives. We will not rest until every person has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne. Follow PPMD on Facebook, Twitter, and YouTube

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SOURCE Parent Project Muscular Dystrophy

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Last Updated: 01-Feb-2019