Our beloved John Massey was more than a husband, father, and son — he was a kindhearted man who gave to his community with generosity and purpose. He devoted time and energy to youth mentoring, quietly supporting young people, offering guidance, encouragement, and love. To the youth he worked with, he was a father figure and role-model — a steady presence, full of warmth, compassion, and faith in a brighter future.

John was 55 — healthy, strong, full of life, active, always ready to help others. So when he began feeling unwell and visited doctors over several weeks, we never imagined what lay ahead. None suspected what was really happening. It was only after a long, painful decline that he was tested — and diagnosed with Creutzfeldt-Jakob disease (CJD), a devastating prion disease. By the time the diagnosis came, it was already too late.

CJD is a rare, fatal brain disorder caused by misfolded proteins (prions) that damage and destroy brain cells — turning healthy brain tissue into a sponge-like decay, leading to rapid neurological decline, dementia, loss of coordination, memory, sight, movement, and eventually death. For most people diagnosed, death comes within months.  There is no cure, no way to reverse it — only care and heartbreak. 

Losing John to CJD — especially someone as vibrant, loving, and generous as he was — has left a hole no words can fill. It is a sorrow made sharper by the knowledge that it happened so fast, that the disease was misunderstood, that no treatment existed.

But even in our grief, we are determined to act. In John’s memory — for the community he loved and the lives he touched — we’re asking for your help. We invite you to support the CJD Foundation. This foundation funds vital research into prion diseases: understanding how prions work, improving diagnostics, developing treatments — with the hope that what happened to John might one day be prevented or cured.