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Fall is the start of a new year for so many of us, in so many different ways. The kids are back at school, the calendar is once again packed, and there is the faintest hint of a crispness in the air. Ivy Scherbarth and I talk about this time of year in our co-blog this month – the simultaneous longing for the lazy days of summer and the excitement of starting a new chapter recharged. PPMD had no summer break. We went straight from Connect Conference mode to Coach To Cure MD and our first End Duchenne Gala. Two exciting awareness and fundraising events – one marking five incredible years, the other launching in New York City this December. We’ve also welcomed a new family member. Mary Connolly joins PPMD as Vice President of Development. She comes to PPMD with years of experience in nonprofit fundraising and is a passionate runner. Read her blog and meet this great addition to our team, who has hit the ground running to help end Duchenne. Speaking of Coach To Cure MD, we also want to introduce you to our Featured Voice for September, Connor Vassigh. At 6 ½ years old, he and his family have supported the program for the last few years by hosting a “Muscle Party” in Connor’s honor. Meet this great first grader and take a moment to join our team if you haven’t already done so!

With school back in session, we have some important information for you on flu vaccinations, medical alert bracelets, and a downloadable webinar on IEPs. We are also launching a three-part webinar series on cardiac issues featuring the most knowledgeable cardiologists in the Duchenne space. Make sure you start the school year off informed and armed with knowledge.

Have a wonderful autumn and we’ll see you on TVs across the country September 29 for the 5th Annual Coach To Cure MD!

-Pat 

Where we are & what we're doing

PPMD makes it a priority to attend the most important meetings and conferences related to Duchenne, as well as connecting with the leaders in the field to move research, care, and advocacy forward.

See where we’ve been and where we are going:

  • 9/5-6 – Pat attends the For DMD Meeting
  • 9/7 – Pat meets with PTC Therapeutics
  • 9/10Pat attends NORD meeting
  • 9/11-12  – Pat attends Newborn Screening meeting
  • 9/12Ryan meets with Filippo Bucella and Nicoletta Madia, of Parent Project Italy. Discussions included fundraising strategies and connecting the internal community.
  • 9/12 – Sharon serves as a panelist at the NINDS non-profit forum. During her topic, “One voice or many”, the panelists discuss the challenges of collaborating with other organizations in the same disease space.
  • 9/14 – Kathi attends Nationwide myology course
  • 9/14 – PPMD Board Meeting
  • 9/17 – Pat and Kathi attends HerSelf First meeting
  • 9/20 – Sharon attends the NINDS Council
  • 9/20 – Pat presents at DIA/NORD Rare Disease Meeting
  • 9/20-22 – Kathi attends Pediatric Ventricular assist device meeting
  • 9/27 – Pat accepts R.A.R.E. Project award for PPMD
  • 9/29Holly presents on the use of DuchenneConnect data at the TREAT NMD curators meeting
  • 9/29 – Kathi attends Child Neurology Meeting
  • 10/2 Pat presents keynote speech at the Duchenne Foundation meeting in Australia
  • 10/10 – Holly presents on Therapeutic Misconception and Optimism to the SoCRA meeting

 




Pat Furlong, Founding President, CEO
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