Patient Led. Community Focused.

APOL1

Patient Led. Community Focused.

pexels-rdne-7551752

Our Vision

A world where everyone with an APOL1 risk variant has access to comprehensive education, early detection, and personalized care throughout their health journey.

APOL1Imagery

Patient Led. Community Focused.

APOL1

Our Vision

A world where everyone with an APOL1 risk variant has access to comprehensive education, early detection, and personalized care throughout their health journey.

pexels-rdne-7551752

Our Mission

Our mission is to bridge the gap between complex research and accessible patient care through education, advocacy, and community support.  

LEARN MORE
pexels-ninthgrid-2149521550-30677591
pexels-august-de-richelieu-4262424 (1)

The Four Pillars of the APOL1 Action Alliance

Everything we do is grounded in four core commitments — to educate, advocate, reach communities, and build partnerships that drive lasting change.

01

Patient Education

Culturally responsive APOL1 educational materials for patients and families. AAA develops and distributes educational resources specifically designed for communities of African descent, addressing APOL1 basics, genetic risk, disease progression, and treatment options in accessible and culturally resonant formats.

 

03

Community Outreach

AAA meets communities where they are — in trusted spaces like HBCUs, faith organizations, and community health centers. Our outreach model is explicitly designed to bridge the gap between emerging precision medicine and the communities that need it most.

02

Advocacy

AAA amplifies patient voices at every level, from individual healthcare encounters to state legislatures and federal health equity coalitions. We build the infrastructure patients need to share their stories and drive systemic change.

04

Strategic Partnerships

AAA builds alliances with pharmaceutical companies, academic medical centers, research institutions, and peer advocacy organizations. Our partnership model is collaborative, not competitive, designed to amplify collective impact across the kidney disease ecosystem.

LEARN MORE ABOUT
OUR PROGRAMS

01

Patient Education

Culturally responsive APOL1 educational materials for patients and families. AAA develops and distributes educational resources specifically designed for communities of African descent, addressing APOL1 basics, genetic risk, disease progression, and treatment options in accessible and culturally resonant formats.

 

02

Advocacy

AAA amplifies patient voices at every level, from individual healthcare encounters to state legislatures and federal health equity coalitions. We build the infrastructure patients need to share their stories and drive systemic change.

03

Community Outreach

AAA meets communities where they are — in trusted spaces like HBCUs, faith organizations, and community health centers. Our outreach model is explicitly designed to bridge the gap between emerging precision medicine and the communities that need it most.

04

Strategic Partnerships

AAA builds alliances with pharmaceutical companies, academic medical centers, research institutions, and peer advocacy organizations. Our partnership model is collaborative, not competitive, designed to amplify collective impact across the kidney disease ecosystem.

LEARN MORE ABOUT
OUR PROGRAMS

Our Leadership

Sharron Rouse - President/Co-Founder

Sharron S. Rouse is a dedicated leader and transplant survivor known for her resilience and community-driven advocacy. With deep expertise in education and nonprofit management, she founded SR Consulting Services LLC and co-founded the APOL1 Action Alliance to foster progress in healthcare and patient education. As the founder of Kindness for Kidneys International, Inc., Sharron transforms personal experience into meaningful support, leading nationally recognized programs that assist thousands of kidney warriors each year. Her professional influence extends to various high-level advisory boards and patient advocacy committees.

Richard Knight - Vice President & Co-Founder

Richard A. Knight is a twenty-year kidney transplant recipient, former hemodialysis patient, and Co-Founder of the APOL1 Action Alliance. As Vice President, he leads the organization’s strategic operations, pharmaceutical partnerships, and long-term growth. A former President of the American Association of Kidney Patients (AAKP), Richard brings deep expertise across patient advocacy, federal health policy, and precision medicine. He serves as an Adjunct Instructor at Bowie State University and as Treasurer of the Personalized Medicine Coalition. His advisory roles span NIDDK, NIH, CMS, and the International Society of Nephrologists. He is a recipient of two Presidential recognition awards and the ASN President’s Award, and has published in peer-reviewed journals including Nature and the Clinical Journal of the American Society of Nephrology.

Board Members

Barbara Harrison
Board Member
Marva Moxey-Mims, MD, FASN
Board Member
Kevin Fowler
Board Member
Janice P. Lea, MD, MSc, FASN
Board Member
Glenda V. Roberts
Board Member
James W. Lillard, Jr., PhD, MBA
Board Member
LEARN MORE ABOUT
OUR BOARD