About The Founder
Story of Nathan
A Life Changed by Leukemia
At 16, Nathan Ehrlich faced a life-altering diagnosis: leukemia. With unwavering support from his family and a dedicated medical team, he underwent a bone marrow transplant that led to his remission. For nearly a decade, Nathan thrived, building a family and embracing life.
The Mystery of Declining Health
However, in his late 20s, Nathan's health began to decline mysteriously. The turning point came in 2018 when he experienced a severe seizure, leaving him unable to work. After two challenging years, in 2020, Nathan received a definitive diagnosis: a mutation in the SAMD9L gene, linked to Ataxia-Pancytopenia Syndrome (ATXPC). This rare autoinflammatory condition can lead to bone marrow failure and neurological complications.
Turning Adversity Into Action
Rather than succumbing to despair, Nathan channeled his resilience into action. In 2023, he established The SAMD9L Foundation, aiming to unite patients, fund research, and develop treatments for this rare disease. One of the foundation's inaugural projects was a high-throughput drug screening in collaboration with the Broad Institute at MIT, seeking potential therapies among existing FDA-approved drugs—a venture requiring significant funding.
Fueling Progress Through Community and Hope
Through community support and a matching donation from Seattle Children's Hospital, the foundation successfully raised the necessary funds. Nathan's journey—from battling leukemia to confronting SAMD9L—epitomizes resilience and hope, inspiring a movement dedicated to supporting others facing similar challenges.
