Sybil Strong Foundation

At age 14 Sybil was diagnosed with Batten Disease, a neuronal ceroid lipofuscinoses (NCLs), a rare, inherited neurodegenerative disorder that begin in childhood leading to progressive vision loss, seizures, cognitive decline& motor skill impairments. Batten disease is a rare, neurodegenerative disorder that causes vision loss, mobility loss, cognitive decline and seizures. There is currently no

treatment and no cure but there is Hope. Sybil Strong Foundation was founded to raise awareness, support and funds to fight Sybil's rare disease and other rare diseases like Batten Disease. The life expectancy of a child with Batten Disease is late teens to early 20s. Sybil continues to defy the odds, she is 24 years old and has been battling the disease for 12 years with incredible faith, strength, resilience and the biggest heart

Despite her fight the disease is relentless, and we need your help more than ever to fight back. Sybil's amazing team of doctors at Boston Children's Hospital have been working for over five years on an experimental customized treatment for Sybil's disease using anti-sense oligonucleotides (A*Os). A*Os have the ability to slow down or halt the progression of some rare diseases. Less than 50 individuals across the country have received A*O treatment for their rare disease and there is a chance Sybil can be the next. We are driven by gratitude and hope that a treatment or cure can change the future for all children affected by Batten disease.