As you read this month's newsletter, the 2012 Summer Olympics in London are coming to a close. The world’s best athletes are heading home with their medals or their hearts broken, but all of them taking with them memories that will last a lifetime. For this community, we will remember an Olympian who swam for our sons and daughters who can’t. Ryan Lochte captured Olympic gold (and silver and bronze) and our hearts. And while you cheered him on, you gave towards to potential therapies that PPMD feels strongly about – tamoxifen and SERCA2a. You too, are a champion of Olympic proportions in our eyes! Speaking of champions, we are excited to introduce you to our Featured Voice for August, Sean Quigg the founder of Spaghetti Arms. This is a wildly creative young man who is raising awareness across the country at rock concerts and art festivals. Little does he realize, he’s the real rock star! Finally, as many of you get back into the swing of school and the rest of you prepare for that inevitable first day, we want to update you on the latest care recommendations, give you access to presentations from our 2012 Connect Conference, and make sure you save the date for our upcoming webinar on school issues.  Plus, you have to check out the incredible work of photographer Rick Giudotti and Positive Exposure.

 

Summer’s winding down, but it’s not over yet. Stay cool, keep your head up, and thanks again for supporting our Go for the Gold Campaign

 

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:

  • August 2Kathi and I attended follow up meeting with Jerry Mendell at Nationwide’s Children’s Hospital as a follow up to Transforming Duchenne Care Meeting
  • August 14 – I have a meeting with Lawrence Charnas/Shire
  • August 17Holly to present on therapeutic misconceptions at NINDS
  • August 22 – I will be teaching leadership to young women (My alma mater, high school)
  • August 28 – DoD grant documents arrive for review (I am on the committee)
  • September 2 – I will be participating in the Disneyland half marathon
  • September 5-7 – For DMD Investigator Meeting in Rochester
  • September 12Sharon to attend NINDS Nonprofit Forum
  • September 20-21 – Sharon to attend NINDS Council Meeting (Sharon on the Council)
  • September 29-30 – Holly and Ann Martin (from DuchenneConnect) will attend the TREAT-NMD curators’ meeting in Instanbul, Turkey. Holly will present on the DuchenneConnect registry and will participate in the curators training with Ann.

 



 

Pat Furlong, Founding President, CEO
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Comment by Ofelia Marin on August 13, 2012 at 2:29pm

Please let us know what Shire's plans are with ACE-031. It's been on hold for a long time. Makes me wonder if Acceleron would have been faster if they did not partner with Shire. :( When Prosensa and GSK partnered that added 1.5 yr delay...I pray that it doesn't happen with Sarepta as well, our sons do not have time for years of delays.

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