Dallas Mavericks owner and Shark Tank star Mark Cuban has donated $250,000 in memory of Victoria’s Simon Ibell to a non-profit organization devoted to finding a cure for Hunter syndrome.
Ibell, who suffered from the rare genetic condition also known as MPS II, died last year at the age of 39.
He was introduced to Cuban by Steve Nash when the former National Basketball Association star from Saanich played for the Mavericks.
Nash had known Ibell since their days together at St. Michaels University School in Victoria.
Ibell served as student-manager of the school’s basketball teams and later held the same position with the University of Victoria Vikes men’s basketball team.
It’s not the first time Cuban has donated his time and money to causes that Ibell championed.
In 2002, Cuban contributed half of the $250,000 that Ibell raised for rare disease research by cycling from Port Hardy to Victoria — teaming with Nash and Olympic triathlete Simon Whitfield on the home stretch.
In 2016, Cuban spoke at a fundraising dinner in Montreal for the iBellieve Foundation that Ibell founded after moving to Toronto.
This time, the Mark Cuban Foundation donated the money to Tennessee-based Project Alive, which is trying to raise $2.5 million to finance a gene therapy clinical trial for boys with Hunter syndrome. There are only about 2,000 people in the world who suffer from the disease.
“We’re so close to being able to offer the tangible hope of a cure to families affected by this disease,” Melissa Hogan, Project Alive’s president, said in a statement.
“I know that Simon would be proud and honoured if he were here as we try to finish strong toward our goal.”
The statement quoted Simon’s mother, Marie, saying that she was touched by the donation, which honours her son’s “heart and his love for these children and gives hope to the cure he was determined to secure.”
Ibell’s longtime friend and SMUS coach, Ian Hyde-Lay, said in an interview that the donation was a “wonderful” gesture by Cuban and one that would have been fully appreciated by Ibell.
“That was one of his great traits; he was just appreciative of everything. He was just a guy that never complained, was thankful and never looked at his situation as a negative,”Hyde-Lay said.
“He just always talked about the opportunity that he had of living with a rare disease as opposed to the challenges.”
Hyde-Lay said he feels the same sense of gratitude for having had the chance to know Ibell.
“I feel tremendously blessed to have crossed paths with him in my life,” he said. “He’s taught a lot of people a lot of things.”
