Los Angeles County and Supervisor Kathryn Barger acknowledged June as Batten Illness Consciousness Month, presenting Undertaking Sebastian, a neighborhood nonprofit that helps promote analysis to cures for uncommon ailments like Batten, with a scroll to commemorate the event.
“It’s essential to have the ability to use our voice as a board to teach, so it’s not nearly commemorating and recognizing June as Batten Illness Consciousness Month, it’s about educating the general public concerning the illness,” Barger mentioned, including that she hadn’t recognized about it earlier than listening to about Undertaking Sebastian, both. “Whenever you meet Sebastian, you notice what an important younger man he’s, so it’s simply my honor to have the ability to try this. And I’m going to work with them to intensify consciousness concerning the illness.”
In 2012 when Christopher Velona’s son was recognized with Batten illness CLN8, a uncommon neurological situation that impacts two to 4 of each 100,000 reside births within the U.S., there was no treatment, and it appeared as if there was little or no analysis being carried out, Velona mentioned.
That very same yr, Velona began Undertaking Sebastian to assist discover a treatment for Batten, a mission that was finally expanded to incorporate any uncommon illness.
Batten illness is terminal and claims the lives of most youngsters and youths who’re recognized with it, and it was by means of gene remedy alternative that Sebastian, who will flip 18 in July, continues to be right here immediately.
“He’s a drive to be reckoned with,” Velona mentioned to Barger as she and Sebastian confirmed off their muscle tissues.
Now, the nonprofit is constant to work towards elevating funds for a treatment for Batten and different uncommon ailments, in addition to to assist kids with the illness of their each day struggles.
“It’s wonderful how nice issues have been progressing,” Velona mentioned of the group. “We’re simply actually grateful to have the platform to lastly begin to acknowledge this very uncommon illness, … however we want extra consciousness and we want extra funding for not solely rare-disease analysis, however to assist Batten illness — and these youngsters — have the prospect at a full life.”
Wednesday is Worldwide Batten Illness Consciousness Day, and Undertaking Sebastian is encouraging residents to put on teal inexperienced to point out their assist. Forward of the day, town of Santa Clarita did simply that, lighting Metropolis Corridor teal inexperienced Tuesday night time.
Undertaking Sebastian is partnering with Shade Me Mine for an in-store fundraising occasion, the place 15% of complete retailer gross goes to assist Batten illness consciousness, June 11-13 at 24300 City Middle Drive, Suite 106. The shop is open 11 a.m. to eight p.m. Friday and Saturday and 11 a.m. to six p.m. Sunday.
For extra info on Undertaking Sebastian, go to projectsebastian.org.