His Son Died of a Rare Disease. Now Cavaliers Owner Dan Gilbert Is Contributing $50M a Year to Find a Cure

**Cleveland Cavaliers Owner Dedicates Millions to Neurofibromatosis Research Following Son’s Tragic Death**

Dan Gilbert, the owner of the NBA team Cleveland Cavaliers, has pledged an extraordinary investment of approximately £50 million annually towards research on neurofibromatosis. This commitment is deeply personal, coming in the wake of his son Nick’s death in May 2023, at the age of 26, due to complications from the rare genetic disorder.

Nick Gilbert, often seen at NBA events alongside his father, had been diagnosed with neurofibromatosis type 1 (NF1) as a young child. The condition, as defined by the Mayo Clinic, leads to the formation of tumours on nerve tissue and changes in skin pigmentation. While most of these tumours are non-cancerous, they can pose serious health risks, including complications with learning, vision, and even cardiovascular issues.

In a heartfelt interview with CNBC, Gilbert shared his feelings about his son, describing Nick as his “hero.” He expressed his determination to continue his son’s legacy by striving to “wipe this disease off the planet.” Gilbert recalled that Nick’s struggles began early in his life, noting that the first tumour developed shortly after birth, affecting his optic nerve. It was only as Nick approached six years old that the tumour began to grow significantly, leading to numerous medical interventions.

The pain of Nick’s illness was palpable, with Gilbert recounting the challenges faced by his son in the last years of his life, particularly related to a rapidly growing tumour on his brainstem. This specific challenge severely hampered Nick’s ability to breathe, hear, and communicate, demonstrating the devastating impact of the condition on his day-to-day living.

In memory of Nick, the Gilbert family has initiated several projects to promote community engagement and awareness. They opened ‘Gilly’s Clubhouse’ in downtown Detroit, named affectionately after Nick’s childhood nickname. Additionally, Nick’s siblings founded a nonprofit organisation, ‘The Gilly Project’, aiming to further support those affected by neurofibromatosis.

Dan Gilbert established the Gilbert Family Foundation in 2015 alongside his ex-wife, Jennifer. Since then, the foundation has taken on the critical goal of finding a cure for neurofibromatosis. Following his own harrowing experience of a major stroke in 2019 and subsequently losing his son, Gilbert emphasised the importance of focusing on aspects of life that one can control. “You just have to get the next card and try to play it,” he stated, highlighting the need to channel energy into meaningful efforts.

The Gilbert Family Foundation has formed a partnership with the Children’s Tumor Foundation (CTF), one of the foremost organisations dedicated to neurofibromatosis research. The CTF has commended Gilbert’s pivotal role in supporting their initiatives, noting his vital commitment to the cause. In addition, he previously served on the CTF board and was instrumental in funding research that led to the first FDA-approved treatment for inoperable NF tumours.

Despite the advances made in treatments, Gilbert remains resolute in his quest for a complete cure, insisting that progress is being made. He conveyed optimism in a future without this debilitating disorder, stating, “I do believe there is [a cure]. We’re working on something.” His passion for this mission is fuelled by the desire to prevent other families from experiencing the pain that his family endured.

The Gilbert Family Foundation and the Children’s Tumor Foundation have yet to provide further statements regarding their collaborative efforts towards combatting neurofibromatosis. Dan Gilbert’s determination and dedication to this cause shines a light on the personal stories behind such medical conditions, and serves as a reminder of the broader fight against rare diseases.

As efforts ramp up to find a cure, Gilbert’s commitment is a beacon of hope for families affected by neurofibromatosis, inspiring a community of support and research that could change lives for generations to come.