Stephen Piscotty on Losing His Mom to ALS and Turning Grief Into the ALS Cure Project

<p>Former MLB outfielder Stephen Piscotty joins The Giving Game to talk about the ALS Cure Project, the nonprofit he co-founded with his father after losing his mother, Gretchen, to ALS in 2018 — during the middle of his professional baseball career.</p><p>Stephen walks through what ALS actually does to the body, why so few people understand the disease until it touches their own family, and the devastating combination of staying fully mentally present while slowly losing physical control. He shares what it was like caring for his mother at home through her final months, the perspective her attitude gave the whole family, and her request that drove the foundation's mission: to spare others from the same fate.</p><p>The conversation goes deep into the science side of the ALS Cure Project, led largely by Stephen's father, a retired researcher from Lawrence Livermore National Lab who has poured himself into drug repurposing studies, multimodal data collection, and gene-combination research aimed at understanding what actually causes ALS. Stephen is candid about the unique challenge of fundraising for a rare disease compared to more widely recognized causes, and reflects on life after baseball — three young kids, a part-time hitting coach role with the Oakland A's system, newly discovered golf frustrations, and full "stay-at-home dad" energy.</p><p><b>If Stephen's story moved you, you can support the ALS Cure Project using the link below.</b></p><h2>What We Cover</h2><ul><li><b>(01:56)</b> What is the ALS Cure Project, and why Stephen and his father started it</li><li><b>(02:41)</b> ALS 101: what the disease actually does to the body</li><li><b>(04:07)</b> Losing his mother Gretchen at 55, and her final days at home</li><li><b>(05:22)</b> Finding purpose after baseball through his mother's cause</li><li><b>(09:10)</b> Who Stephen is outside of baseball and ALS advocacy</li><li><b>(11:30)</b> Why niche disease charities struggle to compete for donor attention</li><li><b>(13:15)</b> Inside the research: drug repurposing, data collection, and gene studies</li><li><b>(16:33)</b> His father's post-retirement mission and the road still ahead</li><li><b>(16:33)</b> Thoughts on ALS awareness moments like the Ice Bucket Challenge</li><li><b>(24:54)</b> Learning golf as a retired pro athlete (and why coaches say it's the hardest transition)</li><li><b>(27:31)</b> Life after baseball: coaching hitting for the Oakland A's system</li><li><b>(30:45)</b> Being traded home to