APOL1 Coalition
The APOL1 Coalition is a multi-year project established by American Kidney Fund (AKF) that is convening a diverse network of partner organizations and leaders, healthcare professionals, patients, researchers and advocates to define priority needs related to APOL1-mediated kidney disease (AMKD), strengthen collaboration and centralize resources about AMKD.
Areas of focus
United by a shared commitment to increasing awareness, the coalition fosters collaboration, drives education and amplifies the voices of those affected to create meaningful and lasting impact.
The areas of focus that guide our work are:
- Identifying priorities and develop actionable strategies for the Coalition: Sharing key insights on the current state of AMKD to define priority needs
- Strengthening collaboration across the AMKD community: Engaging patients, health care professionals, researchers and partner organizations to identify needs, gaps and solutions to support collective efforts in AMKD education, outreach and care improvement
- Developing a patient-centered hub of AMKD resources: Promoting collaborative resources and information-sharing across partner organizations and among key leaders in the AMKD space.
- Demonstrating impact: Tracking achievements and evaluating progress toward Coalition goals
Charter members
Charter members of the coalition are as follows:
- Amy Beckrich, CAE, Director of Projects and Operations, Renal Physicians Association
- Joy Buie, PhD, MSCR, RN, Vice President, Research, Lupus Foundation
- Kelelaye Emiru, MBA, Vice President, Center for Professional and Strategic Alliance, National Minority Quality Forum
- Gentzon Hall, MD, PhD, FASN, Medical Director, GlomCon – EMBARK Initiative
- Barbara Harrison, GC, Genetic Counselor, Howard University
- Richard Knight, Co-Founder, APOL1 Action Alliance
- Mark Lim, PhD, PMP, Vice President for Research, Discovery, and Innovation, American Society of Nephrology (ASN)
- Anika Lucas, MD, Nephrologist, Duke University Hospital
- Antonio Martez, International Vice President, Health and Wellness, Kappa Alpha Psi Fraternity, Inc
- Emani McConnell-Brent, Patient Advocate
- Opeyemi Olabisi MD, PhD, Nephrologist, Duke University Hospital
- Glenda Roberts, Director, Communications and Patient Engagement, Mount Sinai Health System
- Mary-Beth Roberts, MS, CGC, Genetic Counselor, Cleveland Clinic
- Sharron Rouse, Executive Director & Co-Founder, Kindness for Kidneys International, Inc & APOL1 Action Alliance
- Junelle Speller, MBA, Chief Strategy Officer, GlomCon Foundation
- Deborah Stamps, EdD, MBA, MS, RN, GNP, NE-BC, CDE®, FADLN, FAAN, National First Vice President, Chi Eta Phi Sorority, Incorporated
- Ada D. Stewart, MD, FAAFP, Board-Certified Family Physician, HIV Specialist and Colonel in the U.S. Army Reserves
- Quenton Turner-Gee, Patient Advocate
We are grateful to the above individuals and institutions for their participation in this collective focused on the unmet needs of the APOL1 community. We are most appreciative to our sponsors, Vertex Pharmaceuticals and AstraZeneca for their support of this work.
Learn how you can become APOL1 Aware
Learn about a genetic variation in the APOL1 (AMKD) gene which can increase the chance of kidney disease among people who have Western and Central African ancestry, this can include people who identify as Black, African American, Afro-Caribbean, and/or Latina/Latino.
Learn more about AMKD Awareness Day
The American Kidney Fund is leading a national call to action to raise much-needed awareness about APOL1-mediated kidney disease (AMKD) and how your genes can impact your kidney health.
This page will be updated regularly as APOL1 Coalition activities continue to advance.