When we think of leaving an inheritance for the next generation, we traditionally think of financial assets or property. But, what about your genetic legacy?
In the United States, approximately 35% of people on dialysis for kidney failure identify as African American, even though they’re only 13% of the population. Although some of this is due to factors such as disparities in access to healthy foods and adequate health care, scientists have recently discovered a genetic link. Changes in a gene called APOL1 can be associated with chronic kidney disease, and those changes are more common in people of African descent.
For years, I lived with the unanswered question of why my kidneys suddenly failed in 2006. I was a vibrant professional school counselor and a new mother to a five-month-old daughter, with zero family history of renal disease, diabetes, or high blood pressure. Diagnosed with Focal Segmental Glomerulosclerosis (FSGS), a rare condition causing severe kidney scarring, I faced an overwhelming wave of denial and silent depression. The defining turning point arrived when my nephrologist issued a stark, “do-or-die” warning to start dialysis. At this unimaginable crossroad, I chose to shift my internal narrative from despair to purpose, resolving to use my time in that dialysis chair to build a roadmap for the people coming behind me. In 2013, my sister stepped forward as my living donor, giving me the life-saving gift of a kidney transplant. Empowered by this renewed lease on life, I founded Kindness for Kidneys International, Inc. to ensure no other family would ever have to navigate the terrifying landscape of kidney disease blindsided and alone.
Despite the success of my transplant, the mystery of my original diagnosis lingered until I began hearing about the APOL1 gene at national kidney forums. A genetic test ultimately provided immediate, life-altering clarity: I carried two copies of the G1 high-risk APOL1 alleles. My FSGS wasn’t the byproduct of personal or lifestyle failings—it was genetic. I had APOL1-Mediated Kidney Disease (AMKD). This aggressive condition uniquely and disproportionately impacts individuals of African ancestry, stemming from an evolutionary trait that once protected against African Sleeping Sickness but now triggers rapid, premature renal decline. AMKD is a silent diagnostic mimic that frequently accounts for a massive percentage of FSGS and hypertension-attributed kidney failure in Black communities, often causing severe, irreversible damage before a single physical symptom ever appears.
Discovering my genetic status replaced my lingering confusion with a fierce mission to eradicate the heavy burden of shame and guilt felt by kidney warriors who mistakenly blame themselves for a disease woven directly into their DNA. Recognizing a profound systemic gap in awareness and diagnostic access, I co-founded the APOL1 Action Alliance (AAA), stepping into the role of President alongside veteran patient advocate, Richard Knight. Our Alliance operates with an urgent, community-first mandate to bridge the massive education gap in communities of color, empower families with a clear roadmap to access early genetic testing, and unite patients, healthcare providers, and pharmaceutical developers to accelerate targeted therapies.
To become a part of this collective movement, you can connect directly with our leadership team by visiting our official website at apol1alliance.org or by emailing us at info@apol1alliance.org. Through our platform’s dedicated contact portal, we actively coordinate partnerships, patient navigation resources, clinical trial enrollment, volunteer programs, and speaking engagements. Through my two-decade survival journey, I challenge the world to look closely at what we leave behind—because health equity, genetic clarity, and active community connection are the most critical inheritances we can secure for the next generation.
Visit https://apol1alliance.org/ for more information about AMKD, APOL1 and the APOL1 Action Alliance.
