Muscular Dystrophy Coordinating Committee Meeting

Virtual | 1pm - 5pm EST

Meeting Agenda - 12/20/2021
Time Presentation
1:00 – 1:10    

Introductions and general information
  Glen Nuckolls, National Institute of Neurological Disorders and Stroke (NINDS/NIH), MDCC Designated Federal Official

1:10 – 1:30  

Chair Presentation
  Diana Bianchi, Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD/NIH), MDCC Chair

1:30 – 2:15 

New Member Presentations
  Debra Miller, Founder and CEO, CureDuchenne
  Michael J. Goldstein, Director, Office of Medical Policy, Social Security Administration
  Alisha Keehn, Branch Chief, Genetic Services Branch, Health Resources and Services  Administration (HRSA)


Update on Medicare Coverage for BiPAP
  Eugene Freund, Centers for Medicare and Medicaid Services

2:30-2:45  Break
2:45 – 4:15

“Strategies to Increase Inclusion of Racial and Ethnic Minorities in Research Studies”

Session Introduction
  Glen Nuckolls, NINDS
  Heather Watkins, Disability Advocate

An FDA Perspective: Advancing Racial and Ethnic Minority Participation in Clinical Trials
  RADM Richardae Araojo, U.S. Food and Drug Administration

Prevalence and Disparities in Muscular Dystrophies
  Natalie Street, Centers for Disease Control and Prevention

Community Engagement in Translational Research: Our Experience in Puerto Rico Studying Pediatric Rare Lung Diseases”
  Wilfredo De Jesus Rojas, University of Puerto Rico – Medical Science Campus

4:15 - 4:55  

Panel Discussion of Diversity in Research Studies

 Session Presenters
 Joanne Donovan, Edgewise Therapeutics
 Mathula Thangarajh, Virginia Commonwealth University


Closing Remarks
  Diana Bianchi, NICHD


Did you find the content you were looking for?
Please rate how easy it was to navigate the NINDS website

This site is protected by reCAPTCHA and the Google Privacy Policyand Terms of Serviceapply.