GliaConnect: the Kerrville nonprofit fighting a disease that 2.1 million people may carry without knowing it

Only 775 people worldwide have been officially diagnosed with the diseases Erin Sullivan’s organization was built to fight. But UK Biobank data suggests the actual number of people carrying disease-causing genetic variants may be closer to 2.1 million.

GliaConnect, headquartered in Kerrville, supports patients, families, and caregivers navigating microgliopathies — a cluster of rare, genetic, and progressive neurological diseases caused when defective genes disrupt microglia, the brain’s immune cells. The disruption triggers rapid neurodegeneration in adulthood. The three primary diseases are ALSP (Adult-onset Leukoencephalopathy with Axonal Spheroids and Pigmented Glia), Bandos, and Nasu-Hakola.

Sullivan founded GliaConnect after her mother’s death in order to preserve patient advocacy momentum. Her family has been devastated by the disease across multiple generations — though she tested negative herself in 2023.

The diseases are notorious for misdiagnosis. Symptoms — cognitive decline, severe psychiatric episodes including depression and apathy, seizures, and motor deterioration — closely mimic early-onset Alzheimer’s, Parkinson’s, multiple sclerosis, and frontotemporal dementia. Every patient eventually becomes mute and bedbound.

ALSP specifically follows autosomal dominant inheritance: only one mutated copy of the CSF1R gene from either parent is required. The result is a 50/50 chance of passing the disease to children, with no generation skipping.

“It is an absolutely vital question and it’s why these diseases are so highly misdiagnosed and underdiagnosed,” Sullivan said.

The organization operates in 35 countries. Its shirts feature artwork by Caitlin, a 22-year-old Bandos patient, depicting a brain scan flanked by two zebras — the universal symbol for rare diseases, drawn from the medical aphorism: when you hear hoofbeats, think zebras, not horses.

GliaConnect’s most urgent local need is awareness among Hill Country clinicians — primary care physicians, neurologists, physical therapists, and speech pathologists — who may encounter patients presenting with these symptoms.

“We are determined to make sure that no one walks this journey alone,” Sullivan said.

To donate or learn more: gliaconnect.org.