We were so incredibly proud and honored to be counted as a sponsor for the 2013 Unionville Run for Our Sons!
Our team is pictured here: (from left to right) Kathy Hracho, Meghan Kelly, Jen Hohenberger, Ron Harris, Rob Hracho, Brian Wentzel and Sean Donovan (not pictured).
Several of our ChesterCounty-Pa.com clients climbed on board with us and helped us to field a team in addition to sponsoring the event! Thank you Side Bar & Restaurant, Dan Hanifin, Esq. and Ace Screen Printing!
Paul and Joanna Johnson recently updated us on the success of this year’s 5K. Click the read more button to see the numbers from this year’s recording breaking event! We also have a photo gallery from the day for your viewing pleasure.
(Click the photo to visit our photo gallery.)
“Once again, I sit at my computer, exhausted and exhilarated after another successful Run for Our Sons, wondering how can I possibly express my gratitude to this amazing community. The 4th Annual Run for our Sons was a record-breaker, with our largest crowd ever of close to 700 registered participants.
Our preliminary numbers that include what we collected on race day, what is listed on our website and what came in from our first ever eBay silent auction total $60,000 raised for Parent Project Muscular Dystrophy in honor of Elliott and Henry. We well exceeded our $50,000 goal and for that each and every one of you should be proud. Whether you participated, volunteered, donated or promoted Run for Our Sons, you made a difference.
Someone asked me Saturday about my emotions regarding the turnout and the remarkable outpouring of support. I summed it up with, “It’s like anything is possible.” As more people come to know and care about this disease I have hope for Elliott and Henry and all the boys and young men living with Duchenne. PPMD president, Pat Furlong, was in attendance and equally amazed by the crowd. She commented that our efforts are making a difference, as there are more clinical trials in progress for Duchenne than there have ever been before. The impossible is becoming possible, because of YOU. And for that I am eternally grateful. See you next year.”
Race results are now posted on: www.parentprojectmd.org/unionville
Save the Date: Putting Patients First
When: Wednesday, May 1 at 1pm eastern
On Wednesday, May 1 at 1pm eastern, PPMD will host a webinar to discuss Putting Patients First, a white paper outlining recommendations to speed responsible access to new therapies for Duchenne.
Since we launched our advocacy efforts in 2000, we have seen continual progress in Washington. From the passing of the MD-CARE Act in 2001, to its reauthorization in 2008(hopefully again in 2013), to historic PDUFA and FDASIA legislation passed July 2012. From virtually no funding to over $250 million leveraged in Duchenne-specific resources, the voices of this community continue to be heard in D.C.
Next Wednesday’s webinar will help explain the white paper recommendations, as well as, go over how regulatory policy works. We will also discuss how this important policy document will be used and disseminated in the coming months.
We are optimistic that Putting Patients First will provide guidance for the FDA and other regulatory agencies as they continue to understand Duchenne and this community’s need for accelerated approval.
PPMD will post this presentation on our website after it is over, for anyone unable to join us next Wednesday or for anyone who would like to revisit the information presented.