The Ultimate Fighting Championship (UFC) lifted the spirits of a boy named Sebastian recently while helping to make everyone more aware of Batten disease, the foe Sebastian and his family are fighting.
Earlier this year, Sebastian’s father, Chris Velona, asked UFC to help raise awareness of Batten, a genetic disorder that affects between 2 and 4 of every 100,000 U.S. residents, including Sebastian, and about 1 in every 100,000 people globally.
UFC is a mixed martial arts promotion company that produces events worldwide. Sebastian, 15, and his family are avid UFC fans. Project Sebastian is a nonprofit Velona founded after his son’s 2010 diagnosis to find a cure for Batten, a group of rare inherited neurological conditions also known as neuronal ceroid lipofuscinoses (NCLs), that cause vision loss, progressive motor and cognitive decline, and seizures. Sebastian has the CLN8 form of the disease.
A competitive match called UFC 241 was coming up in August in Anaheim, California, where Sebastian and his family live. It would be a timely opportunity for UFC’s involvement, Velona thought. As it turned out, UFC invited Sebastian and his family to the ceremonial athlete weigh-ins at the Anaheim Convention Center.
“Sebastian was so excited to attend,” Velona said in a story on the UFC website. “He was talking about it days before the event. As the day went on, the experience became more and more amazing.”
As a UFC guest, Sebastian was treated to a behind-the-scenes tour and met UFC athletes on the event’s fight card, including former UFC heavyweight champion Daniel Cormier. Among highlights of his day was meeting and taking a photo with Dana White, UFC’s president.
In addition to raising disease awareness, Project Sebastian is working to raise $3.5 million to help fund a clinical trial of a gene therapy that might treat the teenager. Gene therapy is being studied for several genetic conditions, including Batten disease, and Amicus Therapeutics has trials underway in gene therapies for CLN3 and CLN6.
“[W]e are here to raise the money necessary to treat Sebastian and other children diagnosed with CLN8,” Velona states on the Project Sebastian website.
Go here for more information about Project Sebastian or to make a donation.
In the interim, Sebastian and his family are enjoying memories of a certain afternoon in August.
“It was an unforgettable day,” Velona said. “The experience motivated us in our fight to cure Batten disease.”
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