Integrating a Culturally Competent APOL1 Genetic Testing Program Into Living Donor Evaluation

 

Integrating a Culturally Competent APOL1 Genetic Testing Program Into Living Donor Evaluation

Community Advisory Board

What is a CAB?

Guided by best practices in community-engaged research, including building trust, equity, respect, and capacity-building, our study enlists the expertise of community stakeholders via our Community Advisory Board (CAB) to improve living donors’ informed decision making about donation.  The CAB meets monthly to provide feedback on: study design, study recruitment and retention, informed consent, data collection procedures, data interpretation, and troubleshooting data collection challenges. The CAB also assists with ensuring that the intervention components are culturally sensitive so as to increase receptivity to APOL1 counseling by living donor candidates of African ancestry, and to help minimize the potential for the stigmatization of African Americans and other groups.

CAB Members

Phalese Binion, PhD Candidate 
President and Chief Executive Officer, Westside Ministers Coalition

Jaqueline Burgess-Bishop, MBA, FACHE 
Chief Exectuive Officer, National Kidney Foundation of Illinois (NKFI) 

Monica Fox
Director of Outreach and Government Relations, National Kidney Foundation of Illinois (NKFI)

Joann Howard-Burden
Living kidney transplant recipient

Stephanie Schmitz Bechteler, PhD
Vice President, Executive Director of the Research and Policy Center, The Chicago Urban League

Marion Shuck, MA, MPhil
Vice President, Governmental Affairs and External Relations, Gift of Hope

George Wells
Living Kidney donor 

 

Community Advisory Board

Guided by best practices in community-engaged research, including building trust, equity, respect, and capacity-building, our study involves the expertise of community stakeholders through our Community Advisory Board (CAB). The CAB meets regularly to provide feedback on: study recruitment, participant retention, data interpretation, and troubleshooting data collection challenges. The CAB also assists with ensuring that the study’s intervention components for APOL1 testing and counseling are culturally sensitive and minimize potential for stigmatization among living donor candidates of African ancestry.

Phalese Binion, PhD Candidate 
President and Chief Executive Officer, Westside Ministers Coalition 

Jaqueline Burgess-Bishop, MBA, FACHE 
Chief Exectuive Officer, National Kidney Foundation of Illinois (NKFI) 

 

 

 

Calmetta Coleman
Chief Operating Officer, Chicago Urban League
 

Vea Crawford

 

Monica Fox
Director of Outreach and Government Relations, National Kidney Foundation of Illinois (NKFI)

 

Joann Howard-Burden
Living kidney transplant recipient

 

Marion Shuck, MA, MPhil
Vice President, Governmental Affairs and External Relations, Gift of Hope

George Wells
Living Kidney donor