Alex Manfull Fund brings TILT storytelling event to Hollywood

The Alex Manfull Fund will stage the Hollywood debut of TILT: Stories on the Edge at The Broadwater LA on Sept. 24, spotlighting people affected by PANS, PANDAS and other neuroimmune disorders. The event aims to raise awareness, support research and clinician training, and bring more attention to conditions that can rapidly disrupt young people's lives.

Why it matters: - TILT: Stories on the Edge is designed to spotlight PANS, PANDAS and related neuroimmune disorders that can trigger abrupt, life-changing symptoms in young people. - Proceeds will support research and clinician training aimed at improving diagnosis and care. - The event also seeks to build public awareness around conditions that are often misunderstood or diagnosed late.

What happened: - The Alex Manfull Fund announced the Hollywood debut of TILT: Stories on the Edge at The Broadwater LA, Main Stage, on Sept. 24. - The live event will feature 10 people sharing five-minute stories about “life on the edge.” - Doors open at 7 p.m. and the program runs from 8 to 10 p.m. - Tickets are available online through the event page, and donations are being accepted.

The details: - TILT-Hollywood is the latest stop in a traveling storytelling series that previously held sold-out events in Hermosa Beach and Berkeley, California. - The storytellers include caregivers, survivors and clinicians. - Five speakers will be pre-selected. - Five more will be chosen from the audience through a live random drawing from submitted story pitches. - The event will showcase stories that range from resilience and adversity to joy, growth, humor and unexpected possibility. - One featured story will be from Los Angeles native David Orlinksy, now 23, who developed PANDAS after a strep infection at age 7. - Orlinksy’s infection triggered an immune response that attacked healthy brain tissue. - He went from being an academically gifted, competitive baseball player to a child dealing with intrusive thoughts, severe OCD and motor function problems. - Orlinksy was not properly diagnosed for a year and did not receive treatment for another year. - He eventually recovered. - The Alex Manfull Fund says the event will raise money for critical research and clinician education sponsored by the nonprofit. - The nonprofit was established by Susan and Towny Manfull in memory of their daughter, Alexandra “Alex” Manfull, who died at age 26 from untreated PANDAS. - More about the fund is available at The Alex Manfull Fund. - The organization says PANS and PANDAS can follow common infections such as strep throat and the flu. - The disorders can cause sudden changes in behavior, mood and neurological function. - Common symptoms include obsessive compulsive behaviors, restrictive eating or tics. - Other symptoms can include cognitive decline, behavioral issues, anxiety, insomnia and urinary frequency.

Between the lines: - The storytelling format turns a medical-awareness effort into a live, audience-driven event, which may help make a hard-to-explain set of disorders more relatable. - The focus on both survivors and clinicians suggests the fund is trying to connect personal experience with medical education. - The inclusion of audience-selected storytellers adds unpredictability and broadens who gets heard on stage. - Susan Manfull said the event is meant to foster empathy, hope and shared humanity after her family lost Alex because PANDAS was not recognized and treated in time. - Shari Strulson said the event is meant for people who have faced disorienting or life-altering moments and whose stories deserve to be heard.

What's next: - The Hollywood event will move ahead on Sept. 24 at The Broadwater LA. - The Alex Manfull Fund is accepting storytelling pitches for TILT through Shari Strulson at sharistrulson@gmail.com. - Media inquiries can be directed to Angie Gentile at media@thealexmanfullfund.org. - The event’s fundraising impact will feed into the nonprofit’s research, education and awareness work around PANS and PANDAS.

The bottom line: - TILT is trying to do two things at once: amplify personal stories and speed broader recognition of neuroimmune disorders that can derail children’s lives fast.