Sarah Burgess-Bembnowski
  • Female
  • Beaver Falls, PA
  • United States
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Sarah Burgess-Bembnowski is attending PPMD's event
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Webinar: How You Can Help PPMD’s Advocacy Agenda at Online Webinar - Eastern Time Zone

February 11, 2014 from 1pm to 2pm
PPMD’s advocacy strategy is multi-agency (FDA, NIH, CDC) and multi-layered. Yes, we focus on legislation like the MD-CARE Act which has transformed the landscape in Duchenne. But we also work to shape regulatory policies that reflect the needs of our community, meeting with the FDA and EMA about how the patient voice can best be utilized to speed access to potential therapies in Duchenne. On February 11th , Pat Furlong, Ryan Fischer and Dave Zook (FaegreBD) provided an overview of PPMD’s…See More
Feb 11, 2014
Sarah Burgess-Bembnowski joined Lisa Jones's group
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Cincinnati Children's Hospital Medical Center

For families who take their children to Cincinnati Children's Hospital for DMD/BMD  medical care.See More
Dec 14, 2013
Amy Aikins left a comment for Sarah Burgess-Bembnowski
"Glad to see you in the group Sarah!"
Dec 13, 2013
Sarah Burgess-Bembnowski joined Paul Johnson's group
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Families in Pennsylvania

Group where families in the Pennsylvania or sorrounding area can colloborate
Dec 13, 2013
Sarah Burgess-Bembnowski is now a member of PPMD Community
Dec 10, 2013

Profile Information

About me:
I'm the big sister of my amazing little brother, Jacob (7 years old). Jacob was diganosed with Duchenne muscular dystrophy two years. I now devote my life to doing whatever I can in helping find a cure for ALL boys with Duchenne.
Name(s) of child(ren)/individual(s) with Duchenne:
Jacob Burgess
Age(s) of child(ren)/individual(s) with Duchenne:
7-12
City:
Pittsburgh
State:
PA

Comment Wall (2 comments)

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At 10:25pm on December 13, 2013, Jacobs Mommom said…

Hi Sarah:  I don't come on here much but we are friends on FB.  It was great meeting you yesterday and hopefully we can collaborate on our next Fundraiser.  Speak with you soon!

At 9:21pm on December 13, 2013, Amy Aikins said…

Glad to see you in the group Sarah!

 
 
 

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