Thanks to a Canadian with a rare disease, Dallas Mavericks owner and Shark Tank co-host Mark Cuban just donated $250,000 towards developing a gene therapy to cure mucopolysacharridosis II (MPS II or Hunter syndrome).
That Canadian was Simon Bell. He passed away last year at the age of 39 years. Simon was a 4’ 8” motivational speaker, founder of the iBellieve Foundation, and an advocate for Hunter syndrome. But his real passion was sports. Simon received his degree in Sports Administration at the University of Victoria and managed the University’s basketball team.
One other school that Simon attended was St. Michael’s University School in Victoria and one of that school’s more famous alumni is basketball star Steve Nash. The two were close friends and often worked together in raising awareness and funds to advance research for Hunter syndrome.
One of Simon’s many stunts to raise funds for Hunter syndrome was biking the 500 km length of Vancouver Island. Simon finished that trip with Steve Nash by his side (along with Triathlete Simon Whitfield). That trip raised $250,000 with half of that money coming from another friend of Simon and Steve, Mark Cuban.
Now, the Dallas Mavericks owner is doubling his investment towards finding a cure for Hunter syndrome, by donating $250,000 to Project Alive, a parent-led group that is raising money to develop a gene therapy for Hunter syndrome. Mark Cuban’s donation is in memory of Simon Bell.
Project Alive needs $2.5 million to develop a gene therapy. To date, they have raised $1.75 million. The organization is hoping to start a clinical trial later this year at Nationwide Children’s Hospital in Columbus, Ohio.
In a news release, Melissa Hogan, president of Project Alive said, “We’re so close to being able to offer the tangible hope of a cure to families affected by this disease. I know that Simon would be proud and honored if he were here as we try to finish strong toward our goal.”
A video explaining the gene therapy was included in the news release and shown below.
One of the reason’s Mark Cuban grew so found of Simon was the latter’s tenacity. While there are countless examples of Simon’s stubbornness in various sporting events, one prominent example of his determination occurred in 2008 when he successfully lobbied to have the Ontario government provide Elaprase to all eligible patients with Hunter syndrome. The cost of Elaprase is $400,000 a year and as many in the rare disease space know, getting the provincial government to pay for those expensive medicines after initially saying they would not, is a very difficult task. Part of his lobbying campaign involved his friend Steve Nash, shown in the video below.
Thumbnail image by JD Lasica (Flickr – creative commons)