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PPMD Launches the Every Single [One] Tour

For 22 years, PPMD has brought together families with leading experts, care providers, and industry partners through our Annual Connect Conference, FACES 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.

 

Now, in an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD is launching 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 will bring updates on research, advocacy, and care to half a dozen cities in 2016.

Combining forces with Certified Duchenne Care Centers, FACES coordinators, and DuchenneConnect, and with financial support from industry partners and resource providers, the PPMD team and a rotating roster of special guests will host a FREE day-long meeting packed with important information you need to know. Certain markets will also provide the opportunities for professionals to register for CEU-accredited PT training.

2016 Tour Dates

City

Host

Date

Baltimore, MD Kennedy Krieger Institute April 16
Salt Lake City, UT
University of Utah May 21
Chicago, IL Lurie Children's Hospital August 19
Denver, CO
Children’s Hospital Colorado August 20
Kansas City, MO
Children’s Mercy Hospital October 22
Durham, NC Duke Children's Hospital November 19

These meetings will not replace our Annual Connect Conference, but rather bring some of the most popular aspects of the Connect experience closer to home.

 

If you don’t see a city on our schedule for 2016 and you think there is a strong but underserved community in your area that could benefit from this kind of meeting, let us know. We are already starting to add locations to our calendar for 2017.

 

In addition to these comprehensive all-day meetings, the PPMD team will be visiting clinics around the country that are taking care of the Duchenne population but may not have the resources or the reach to expand their program. We will find out what limitations they face as clinicians and meet the families they serve to better understand how we can help.

 

Take a Look at Our Sample Agenda

8:00 AM Continental Breakfast available
8:30 AM
PPMD Roundtable Meeting begins

Looking at the landscape

Diagnostic Odyssey & Genetics
  • Understanding your mutation
    (Decode Duchenne & DuchenneConnect)

Optimal Care in Duchenne
  • Diagnosis: Now what?
  • Elements of Care
  • Care through the years

Certified Duchenne Care Center / Host Presentation

Research in the Duchenne Space
  • Overview of Duchenne treatment strategies
  • Look at the pipeline

Q & A
12:15 PM
Lunch

Clinical Trials
  • The pipeline & timeline: where are we now and where are we going?

Q & A

Carrier Initiatives
  • Carrier health & screening
  • Carriers & Duchenne Connect

Advocacy Initiatives
  • What steps PPMD is taking to bring treatments to you

Physical Therapy
  • The importance of PT
  • Hands on stretching
6:00 PM Discussion Download & End of Day

Additional Sessions Tailored to Your Community


Each meeting will offer additional sessions, sometimes unique to the community we are visiting, that we will develop with the hosting clinic or hospital.

Some of these special sessions include:

  • Sib Shops, for siblings of people with Duchenne
  • Transition panels, for teens and adults with Duchenne
  • Professional Physical Therapy training day where participants can receive continuing education credit

Sign up for PPMD Updates


Register with PPMD
 to make sure you receive email notifications when registration for these FREE day-long meetings open.

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Comment by Jennifer Powers on August 15, 2016 at 4:00pm

I can't wait!!

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