Los Angeles County Supervisor Kathryn Barger recognized June as Batten Disease Awareness Month, presenting Project Sebastian, a local nonprofit that helps promote research to find cures for rare diseases like Batten, with a scroll to commemorate the occasion.
“It’s important to be able to use our voice as a board to educate, so it’s not just about commemorating and recognizing June as Batten Disease Awareness Month, it’s about educating the public about the disease,” Barger said, adding that she hadn’t known about it before hearing about Project Sebastian, either. “When you meet Sebastian, you realize what a great young man he is, so it’s just my honor to be able to do that. And I’m going to work with them to heighten awareness about the disease.”
In 2012 when Christopher Velona’s son was diagnosed with Batten disease CLN8, a rare neurological condition that affects two to four of every 100,000 live births in the U.S., there was no cure, and it seemed as though there was very little research being done, Velona said.
That same year, Velona started Project Sebastian to help find a cure for Batten, a mission that was eventually expanded to include any rare disease.
Batten disease is terminal and claims the lives of most children and teens who are diagnosed with it, yet with gene therapy replacement Sebastian, who will turn 18 in July, and others lives could be saved.
“It takes months, even years, to go through testing (to) even be considered for a clinical trial,” Velona said of the treatment. “That’s the goal. We are fighting for that chance.”
“He is a force to be reckoned with,” Velona said to Barger as she and Sebastian showed off their muscles.
Now, the nonprofit is continuing to work toward raising funds for a cure for Batten and other rare diseases, as well as to help children with the disease in their daily struggles.
“It’s amazing how great things have been progressing,” Velona said of the organization. “We’re just really grateful to have the platform to finally start to recognize this very rare disease, … but we need more awareness and we need more funding for not only rare-disease research, but to help Batten disease — and these kids — have the chance at a full life.”
Wednesday is International Batten Disease Awareness Day, and Project Sebastian is encouraging residents to wear teal to show their support. Ahead of the day, the city of Santa Clarita did just that, lighting City Hall teal Tuesday night, as they, too, proclaimed June Batten Disease Awareness Month.
Project Sebastian is partnering with Color Me Mine for an in-store fundraising event, where 15% of total store gross goes to support Batten disease awareness, June 11-13 at 24300 Town Center Drive, Suite 106. The store is open 11 a.m. to 8 p.m. Friday and Saturday and 11 a.m. to 6 p.m. Sunday.
For more information on Project Sebastian, visit projectsebastian.org.
