Meet Ali Kimara, a 13-year-old from Tanzania who loves football and PlayStation but lives with a rare, undiagnosed neuromuscular condition that also claimed his sister. His story reveals a critical gap: African populations remain underrepresented in genomic research, leaving many children without answers.
Moved by Ali’s mother, Dr. Mohamed Zahir, a medical geneticist, helped spark a national movement to advocate for rare diseases, fight stigma, and expand access to genetic care. What began with determination—not billions—led to government recognition, funding, and life-changing support for affected families.
Ali is still waiting for his diagnosis, but his courage has already helped others find theirs.
This talk was given at a TEDx event independently organized by a local community.
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