Rare Diseases

Group fighting rare disease Transverse Myelitis carries on without founder

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The rare disease struck her spinal cord without warning, leaving an otherwise healthy 35-year-old woman suddenly disabled from the waist down.

Pauline Siegel waited days for a diagnosis. When it came, it was little help. Research was scarce, because most in the medical community hadn’t even heard of Transverse Myelitis in 1994.

Unsurprisingly, no support group existed.

So she and her husband, Sandy Siegel, established one in their North Side home. Sandy, its president, wrote newsletters. The pair folded and stamped them in the kitchen, fielded countless phone calls and amassed volunteers.

They did their best to ensure nobody ever felt alone, like they once did, after a diagnosis.

The Transverse Myelitis Association’s mission motivated Pauline, 58, a retired Worthington Estates Elementary School teacher, every day until she died in August. A vehicle she was riding in sparked a fatal grass fire while she was vacationing in Montana.

“She offered guidance and support to anyone who called for help, even if it wasn’t easy to recount the emotional experiences she went through,” Sandy Siegel, 66, recalled.

“She was courageous and unbelievably generous.”

The 2017 Rare Neuro-Immune Disorders Symposium is scheduled for 7 a.m. to 8 p.m. Friday and 7:30 a.m. to 5:30 p.m. Saturday at the Hilton Columbus at Easton, 3900 Chagrin Drive, Columbus.

The 2017 Walk-Run-N-Roll Fundraiser benefiting the Transverse Myelitis Association will be held 10 a.m. to noon Sunday at Coffman Park, 5200 Emerald Parkway, Dublin.

Today, the Columbus-based Transverse Myelitis Association has grown…