advocacy, activism and philanthropy

What is Batten disease? How did the UFC help raise awareness for the genetic disorder?

The Ultimate Fighting Championship is using its power to help raise awareness for Batten disease. The mixed martial arts promotion with immense following recently responded to a request from non-profit foundation called Project Sebastian.

Batten disease

Typically found in children, Batten disease is a rare group of nervous system disorders called neuronal ceroid lipofuscinosis type 2 (NCLs) ir CLN2. It usually starts in childhood between the ages of 5 and 10 and it gets worse over time.

Caused by the deficiency of the enzyme tripeptidyl peptidase 1, Batten Disease is a rare inherited condition that leads to an early death. The incurable disorder causes seizures, visual impairment and mobility loss.

In the United States, 2 to 4 out of every 100,000 children are affected by the Batten disease. One way to slow the decline of the disease is an enzyme replacement therapy called cerliponase alfa, which is administrated directly into the brain via a surgically implanted permanent access device.

 

Project Sebastian

Hailing from Anaheim, California, United States, Chris Velona founded Project Sebastian after his son Sebastian Velona was diagnosed with Batten Disease in 2010. All members of their family are avid fans of the UFC.

Chris reached out to the UFC to ask for help to raise awareness for Batten disease. The promotion took the opportunity to help when “UFC 241” was held at the Honda Center in Anaheim on August 17, 2019.

The UFC invited Chris and Sebastian along with the latter’s grandfather Chuck Velona to the “UFC 241” weigh-ins at the Anaheim Convention Center in Anaheim.

In the main event of “UFC 241,” Croatian-American MMA veteran Stipe Miocic, 36, of Independence, Ohio, USA dethroned Daniel “DC” Cormier, 30, of San Jose, California, USA as the UFC Heavyweight Champion. In the co-main event, Nate Diaz, 34, of Stockton, California defeated Anthony “Showtime” Pettis, 32, of Milwaukee, Wisconsin, USA via unanimous decision.

Chris, Sebastian and Chuck met UFC president Dana White, 50, Miocic and other fighters on the “UFC 241” fight card. According to Chris, the experience as special guests to a UFC event in their hometown motivated them in their fight to cure Batten Disease.

To help fight the Batten disease, visit Project Sebastian. Here is a message from Chris:

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