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Center for International Blood and Marrow Transplant Research

Consumer Advocacy Committee

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The Consumer Advocacy Committee provides valuable patient and donor perspectives for the development of the CIBMTR research agenda.

Responsibilities

  • Provide a consumer perspective on CIBMTR's research agenda through participation in Working Committees and Clinical Research Organization (CRO) Services 
  • Provide input to CIBMTR on adapting hematopoietic cell transplantation (HCT) and other cellular therapy research publications for use by the general public 
  • Promote awareness among patients regarding research opportunities 
  • Advise CIBMTR on ways to increase patient participation in research 
  • May submit research ideas to appropriate Working Committees

 

Membership

Members are appointed by the Advisory Committee, based on recommendations from a CIBMTR application review panel, and include:

  • Nine to twelve voting members who serve for as many as two consecutive three-year terms, and may serve an additional three-year term as co-chair. These members are involved with HCT or other cellular therapies either as a patient, caregiver, family member, donor, or staff person / volunteer with an agency that interacts with cellular therapy patients or donors 
  • Ex-officio members from CIBMTR, NMDP, and Health Resources and Services Administration

In addition, committee membership strives to represent a diversity of backgrounds, including persons who:

  • Understand adult and / or pediatric transplant or other cellular / gene therapy issues 
  • Are familiar with cord blood transplantation 
  • Have been or understand the needs of related and / or unrelated donors 
  • Understand issues that affect access to or outcomes of cellular therapy secondary to demographics and diversity 
  • Do not have access to the Internet or are aware of how people without access to the Internet get their information 
  • Are actively involved in cellular therapy-related research 
  • Have marketing, communications, or professional writing experience

 

Meetings

  • The Consumer Advocacy Committee meets annually at the Tandem Meetings of ASTCT & CIBMTR and periodically via conference calls 
  • Works on Consumer Advocacy Committee projects, beyond teleconferences, as needed

Co-Chairs

  • Rebecca Higgins, Milwaukee, WI
  • Robert Lisac, Atlanta, GA

 

Members

  • Vanessa Ann Fabrizio, Aurora, CO
  • ​Sonya Holley, Dunedin, FL
  • Brandon Nuechterlein, Aurora, CO
  • ​​Dimas Padilla, ​​Winter Garden, FL
  • Bryce Powerman, Chicago, IL
  • ​Meryl Selig, ​Woodside, CA
  • Nadine Shapera, Avon, CA

 

Scientific Director

  • J. Douglas Rizzo, MD, MS, CIBMTR MCW, Milwaukee, WI

 

Ex-Officio

  • Carol Doleysh, (CIBMTR liaison), CIBMTR MCW, Milwaukee, WI
  • ​Jackie Foster, MPH, RN, OCN, (NMDP liaison), NMDP, Minneapolis, MN
  • ​Alex Parsons, MBA, CIBMTR NMDP, Minneapolis, MN
  • ​Marilyn Levi, MD, Health Resources and Services Administration, Rockville, MD
  • ​Jennifer Motl, CIBMTR MCW, Milwaukee, WI
  • Katie Schoeppner, MSW, LICSW, NMDP, Minneapolis, MN
  • Bronwen Shaw, MD, PhD, CIBMTR MCW, Milwaukee, WI
  • ​Nawraz Shawir, MBBS, Health Resources and Services Administration, Rockville, MD
  • ​Patricia Steinert, PhD, MBA, CIBMTR MCW, Milwaukee, WI
  • Ben Tweeten, NMDP, Minneapolis, MN