"NephCure met the Albright family in 2021 after then 17-year-old, Joshua, was diagnosed with focal segmental glomerulosclerosis (FSGS). Having just graduated from high school and on the brink of starting college, Joshua’s journey took an unexpected turn when he stumbled upon his incredibly high blood pressure.
Prompted by his mother, Joshua sought immediate medical attention which led to an immediate diagnosis of a rare and rapidly progressive kidney disease: FSGS. With his doctor’s encouragement, he was able to quickly join a clinical trial studying a new potential treatment for his condition. “If it can help me, why not try,” he said.
Genetic testing revealed that Joshua’s kidney condition was caused by a genetic mutation— APOL1 kidney disease.
Chronic kidney disease (CKD) is a national epidemic, with more than 1 in 7 US adults affected and 1/3 at risk. People of color are disproportionately affected by CKD and kidney failure, due to genetic risk factors as well as social determinants of health. 1 in 8 Black Americans are at risk for a severe form of CKD: APOL1 kidney disease.
APOL1 kidney disease, which includes FSGS, is an especially aggressive form of CKD and typically progresses rapidly to end-stage kidney failure, requiring dialysis or transplant. Approximately 40% of Black Americans on dialysis have kidney failure caused by APOL1.
Unfortunately, many people with CKD are not diagnosed until it is already at an advanced stage. APOL1 FSGS currently has very limited treatment options and no cure. However, when patients are diagnosed earlier in the course of the disease, it may be possible to alleviate symptoms, slow the decline of kidney function, prevent dialysis and transplant, and access new treatments in clinical trials.
From the onset, Joshua’s personal journey with rare kidney disease stood out as a beacon of hope—a so-called “success” story that was necessary to share with other young people who are also at risk of APOL1. Since joining the clinical trial, Joshua’s kidney health has stabilized and he’s feeling better. His doctor—and all of us at NephCure—are hopeful that this medicine can help others as well. Joshua has become an inspiring advocate for the rare kidney disease community, sharing his story on numerous panels, speaking at fundraising events, and much more.
We filmed this story in 2022 in Joshua’s family home just outside of Atlanta, GA. The footage became a focal point of our 2022 year-end giving campaign and featured prominently in our 2023 digital advertising awareness campagin for APOL1 kidney disease in the Black and African American community.
Through Joshua's resilience, we glimpse a narrative of hope, advocacy, and the collective belief that his journey may pave the way for others battling the complexities of APOL1 kidney disease.
Film can also be watched here: [ Ссылка ]"
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