Note: Sign up to receive updates like this in your inbox every month.


So many of our friends and family, including the New Jersey office of PPMD, were affected by Hurricane Sandy a couple of weeks ago, and then hit again by a huge snow storm. To our knowledge, friends of this community survived, but many went days without power, heat, and water. Some lost a little to flooding or downed trees. Others lost virtually everything. As I watched from overseas and saw the devastation of a part of the country I have come to know as a second home, I saw something else emerge. I saw people helping each other. Elementary schools in states across the country, pulling together supplies for the victims. Families opening their doors to neighbors, friends, even strangers in a time of extreme need. Politicians – politicians! – working together, across the aisle to bring relief. And I thought – this is just like our community. This is what Duchenne families do. We help each other, we reach out to each other, we mend each other. And like Duchenne, help doesn’t often come as fast as we would like or as completely as we would like…but eventually, progress is made, baby step by baby step. 


Our community has known and will continue to know setbacks. But we are also starting to learn what victory feels like – no matter how small. You’ll see more research progress in this newsletter as PPMD continues to pursue a mantra of Better, Faster, Now. You’ll see the groundwork we are laying in Washington, D.C., with the FDA with the hopes that promising treatments are understood by federal agencies and accelerated approvals are continued. You’ll see our commitment to care, making sure parents are armed with the tools they need to help their child. 

I also want you to take a minute to meet another remarkable person in this community with Duchenne. Michael Counterman is a born entertainer and teacher, who helps people understand Duchenne through laughter. We have all weathered storms – both literally and figuratively. But I hope, like me, you see this community as a refuge and will continue to turn to us in times of need.

 

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:

  • 11/17: Chairman Bob McDonald and Mary attend the Rally for Ryan Dinner
  • 11/28: Pat attends Orphan Drugs in Rare Diseases meeting
  • 11/28-30: Sharon presents at Partnering for Cures meeting
  • 12/6: PPMD's first EndDuchenne Gala
  • 12/7-9: Kathi attends the ENMC workshop on Exon Skipping 
  • 12/15: Pat and Ryan attend the FACES Northern NY launch

 

 




Pat Furlong, Founding President, CEO
Read more PPMD Staff Blogs


Sign up to receive updates like this in your inbox every month.

Views: 252

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service