The Consumer Advocacy Committee provides valuable patient and donor perspectives for the development of the CIBMTR research agenda.
Responsibilities
- Provide a consumer perspective on the CIBMTR research agenda through participation in Working Committees and RCI BMT
- Provide input to CIBMTR on adapting hematopoietic cell transplantation (HCT) research publications for use by the general public
- Promote awareness among patients regarding research opportunities
- Advise the 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 voting members who serve for up to two consecutive three-year terms. These members are involved with HCT either as a patient, caregiver, family member, donor or staff person / volunteer with an agency that interacts with HCT patients or donors
- Ex-officio members from CIBMTR, the National Marrow Donor Program® (NMDP)/Be The Match® and the Health Resources and Services Administration (HRSA)
In addition, committee membership strives to represent a diversity of backgrounds, including persons who:
- Understand adult and / or pediatric HCT issues
- Are familiar with cord blood transplantation
- Have been or understand the needs of a related and / or unrelated donors
- Understand issues that affect access to or outcomes of HCT 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 HCT-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 CAC projects, beyond teleconferences, as needed
Co-Chairs |
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Bryce Waldman
| Chicago, IL
|
Brandon Nuechterlein
| University of Colorado, Aurora, CO
|
Members
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Nicole Adams
| San Angelo, TX
|
Jonathan (Reid) Besch
| Franklin, TN
|
Rebecca Higgins
| Froedtert Hospital, Milwaukee, WI
|
Sonya Holley
| Dunedin, FL
|
Robert Lisac
| Jacksonville, FL
|
Dimas Padilla
| Winter Garden, FL
|
Meryl Selig
| Woodside, CA
|
Scientific Director |
J. Douglas Rizzo, MD, MS |
CIBMTR MCW, Milwaukee, WI |
Ex-Officio
|
Carol Doleysh, BS |
(CIBMTR liaison) CIBMTR MCW, Milwaukee, WI |
Jackie Foster, MPH, RN, OCN
| (NMDP liaison) NMDP/Be The Match, Minneapolis, MN
|
Mary Hengen, MBA
| CIBMTR NMDP, Minneapolis, MN
|
Jennifer Motl | CIBMTR MCW, Milwaukee, WI |
Meggan McCann, MPH
| CIBMTR NMDP, Minneapolis, MN
|
Mary Senneka
| NMDP/Be The Match, Minneapolis, MN
|
Marilyn Levi, MD | Health Resources and Services Administration, Rockville, MD
|
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
|