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Another Face of Rare Disease

The Cattleman of Wall Street

My uncle Damon was a legend on Wall Street, as well as the cattle circles of the Texas Hill Country where he was raised. Coming from a family with over 4 generations in the cattle business, Damon would eventually branch out—trade a life in livestock for investment stock—and ascend to one of the highest offices of one of the largest financial institutions in the world—vice president of JPMorgan Chase. Growing up on a ranch, Damon was always a healthy man, but that wasn’t enough to stop one of the rarest progressive neurological disorders from taking him from us within 5 months of his diagnosis. Damon was diagnosed with and died of sporadic Creutzfeldt-Jakob (CJD) disease at the age of 57.

Creutzfeldt-Jakob disease is a rare, degenerative, fatal brain disorder

It affects roughly 1 out of a million per year, worldwide. Typically, onset is later in life, and about 70% of individuals die within 1 year. My uncle Damon was one of those individuals.

Uncle Damon’s death took a massive toll on our family, especially his brother…my father. Watching him deteriorate so quickly, so suddenly, and without warning significantly impacted my father’s well-being. Still, my dad left our home in Texas as soon as Uncle Damon was diagnosed and remained by his side in New York City until the bitter end. Uncle Damon passed on Thanksgiving Day 2004. Thanksgiving in our family is now a celebration of Uncle Damon’s life and memory.

There is no cure

Damon saw the best doctors at the best hospitals in New York City; still, there was nothing they could do. All we could do was try to make Damon comfortable. His mind and body succumbed to this awful disease. By the end, Damon completely lost his short-term memory, and suffered from uncontrollable body tremors and debilitating, extreme weakness; he couldn’t even hold his own plate of food on his last visit to our home to Texas. A memory that I will never forget is him giving me a “thumbs up” from his hospital bed—he couldn’t talk at that point, but he knew what he wanted to say. 

Our hope for the future

Working at HCB Health has given me hope that precision medicine might lead to a cure or early diagnosis with a chance of slowing progression. It’s my hope that one day soon, a diagnosis of CJD will no longer be a death sentence.

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