Make ME Visible

Joey Mazzone July 15, 1999 – August 7, 2026 From his obituary: dignitymemorial.com/obituari… "Joseph "Joey" Anthony Mazzone In lieu of flowers, Joey’s wish was for everyone to listen to his music, especially on Spotify. To honor his wishes, we will be giving out True Grit’s Bitten By A Snake album for free as long as supplies last. Check out his Linktree or use the QR code for more information. Please share any pictures, videos, memories, or anything that feels right to you about Joey. Joseph "Joey" Anthony Mazzone, beloved son, musician, martial artist, advocate, leader, and friend, passed away on August 7, 2026, at the age of 27, following an extraordinary ten-year battle with severe chronic and rare illnesses. [...] At just four years old, he began Taekwondo, eventually earning his third-degree black belt and becoming an accomplished competitive martial artist. In 2010, Joey became Nevada State Champion in four divisions and won a World Championship title in Forms while placing in three additional divisions at the World Championships. [...] Joey was equally exceptional academically. He maintained a 4.0 GPA throughout school and attended Bob Miller Middle School and Bishop Gorman High School. His talent for creative writing earned him scholarship recognition, but even as a young student, Joey was concerned with far more than his own accomplishments. At Bob Miller, Joey became wheelchair certified and began dedicating his time to helping students with disabilities, becoming the first student at his school to take on that role. What began after a deeply personal conversation with God became an important part of his life. From approximately seventh through eleventh grade, he continued supporting young people with disabilities through Grant A Gift Foundation. His kindness and service were recognized with a “Be Kind” Award from the Governor of Nevada. By his junior year, Joey had received more than 15 scholarship opportunities. Tragically, the young man who had spent years helping people with disabilities would soon become disabled himself. On July 24, 2016, at only 17 years old, Joey developed the sudden onset of continuous, unremitting head pain that would never go away. He was eventually diagnosed with New Daily Persistent Headache (NDPH), a neurological headache disorder characterized by a distinctly remembered onset and daily, persistent head pain from its beginning. There are currently no medications specifically approved by the U.S. Food and Drug Administration for the treatment of NDPH, leaving patients and physicians to rely largely on treatments developed for other headache disorders and on trial and error in an attempt to find relief. “Headache” hardly seems strong enough to describe the relentless pain and pressure Joey experienced 24 hours a day, seven days a week. It marked the beginning of nearly a decade of complex illness and relentless pain. To put the severity of NDPH into terms that are difficult to comprehend, by the time of Joey’s death, he had endured approximately 87,972 consecutive hours without freedom from that pain. [...] Over the years, Joey faced diagnoses including gastroparesis, Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Syndrome (MCAS), Postural Orthostatic Tachycardia Syndrome (POTS)/dysautonomia, autonomic failure, autoimmune encephalitis, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), tethered cord, cranial instability, increased intracranial pressure, and several vascular compressions, including both jugular veins, as well as renal and iliac vein compressions, including Nutcracker syndrome, along with additional complex conditions. His treatments included IVIG, plasmapheresis, a craniospinal fusion in 2021, and countless appointments, procedures, hospital visits, diagnostic tests, medications, and attempts to find even a measure of relief." Rest in peace, Joey. 🕯🕊 Condolences to his family and all who knew and loved Joey.

TW assisted suicide / #MEcfs It breaks my heart to share this video. It's Luigi saying goodbye shortly before MAID/assisted suicide due to ME/CFS on 11 July 2026. Nonetheless, I also believe people should not close their eyes or look away from what is happening here. Young people are dying — or "choosing" MAID — because their suffering has become unbearable. We need help. There are millions of us. Things have to change. Farewell, Luigi. 🕯🕊 instagram.com/reel/DayLctyuq…