Advocacy in Action: Virtual Town Hall

Facebook Live | February 3, 2021

To commemorate the passage of the MD-CARE Act, PPMD hosted a Virtual Town Hall on Wednesday, February 3, on Facebook Live to look back on past accomplishments and progress made possible by Duchenne advocates, as well as looking ahead at work yet to be done in this new era.

The agenda featured panel discussions by National Institutes of Health (NIH), Food and Drug Administration (FDA), and Centers for Disease Control and Prevention (CDC) leadership, personal reflections from our Duchenne Senate and House Champions, as well as reflections from community members, families and friends who have been influential in our progress in Washington D.C.

The recording of this informative and inspiring event is available below.


All session times notes below are Eastern Standard Time.

1:00 PM ESTPPMD Advocacy in Action Town Hall begins
1:00 PM ESTHear from:
  • Senator Roger Wicker (R-MS)
  • Cheri Gunvalson, MN Advocate
1:15 PM ESTNational Institutes of Health (NIH) Live Panel Session with:
  • Dr. Glen Nuckolls, Program Director, NINDS, NIH
  • Dr. Anne Pariser, Deputy Director, ORDR, NCATS, NIH
  • Dr. John Porter, former Program Director, NINDS, NIH
2:00 PM ESTHear from:
  • Representative Steve Stivers (R-OH)
  • Representative Doris Matsui (D-CA)
  • Dr. Julie Gerberding, Merck, Former Director, CDC
  • Fellow Duchenne Advocates
2:10 PM ESTCenters for Disease Control and Prevention (CDC) Live Panel Session with:
  • Natalie Street, MS, CGC, Health Scientist, NCBDDD, CDC
  • Dr. Catherine Riley, Team Lead, NCBDDD, CDC
  • Dr. Mena Scavina, Nemours Children's Hospital
2:50 PM ESTHear from:
  • Annie Kennedy, Chief of Policy and Advocacy, Everylife Foundation for Rare Diseases
  • Senator Amy Klobachar (D-MN)
  • Fellow Duchenne Advocates
3:00 PM ESTFood and Drug Administration (FDA) Live Panel Session with:
  • Richard Klein, former Director, Patient Liaison Program, FDA
  • Dr. Lei Xu, Chief of the General Medicine Branch, CBER, FDA
  • Dr. Michelle Campbell, Sr. Clinical Analyst for Stakeholder Engagement & Clinical Outcomes, Division of Neurology Products, CDER, FDA
3:45 PM - 4:00 PM ESTHear from:
  • Dr. Janet Woodcock, Acting Commissioner, FDA
  • Joel Wood, Foundation to Eradicate Duchenne
  • Pat Furlong, President and CEO, PPMD
  • Ryan Fischer, Chief Advocacy Officer, PPMD