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Group fighting rare disease Transverse Myelitis carries on without founder

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Thursday, October 19, 2017

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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."
If you go

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.

To learn more, donate to the cause or register to attend, visit myelitis.org/event.

Today, the Columbus-based Transverse Myelitis Association has grown from a grassroots operation into a full-fledged organization with 12,000 or so members in more than 100 countries. The group now advocates for people with all rare autoimmune disorders of the central nervous system, funding first-of-its-kind research, educational programs and clinician-scientist training.

This weekend, many association members will gather for an educational symposium and their second annual Walk-Run-N-Roll fundraiser event in central Ohio.

Without Pauline, the event will certainly take on a new significance, Sandy said.

Through his newsletters, she became a public face for the just 34,000 or so people in the world diagnosed with transverse myelitis searching for answers and support.

The inflammatory disease affects people of all ages and all walks of life and its cause is still not completely understood. There is no cure, but sometimes people regain some function through rehabilitation and treatment.

"You can feel isolated in your experience, and frightened, until you meet someone who understands what you're going through," Sandy said.

In her private life, Pauline's family came first: her two sons and their wives, five grandchildren and dependable service dog, Kazu, a black lab-retriever mix who is now retired. He mastered more than 50 commands, such as picking up items or turning on lights, and could even unload the dryer and wheel her laundry in a wagon.

Pauline's disease didn't slow her down. She kept teaching until early last year and got around using a wheelchair or a motorized scooter. Her grandchildren affectionately named it the "Sitte-mobile," after the Lebanese word for grandmother, and sometimes they rode on it while sitting in her lap.

Her funeral in August was watched online all over the world. This weekend's symposium, which will include remarks in her memory, will also be live-streamed.

Chitra Krishnan, executive director of the Transverse Myelitis Association, said Pauline's sincerity, compassion and kindness left an impact on everyone she met. She also inspired people with neurological disorders to be self-advocates, she said.

"I think by investing in knowledge, in our health, in hope for the future, in research, Pauline lives on in all of us," Krishnan said.

The Transverse Myelitis Association has established The Eclipse Fund in memory of Pauline Siegel. To donate, go to myelitis.org/pauline.

 

 

Author: Alissa Widman Neese, @AlissaWidman
Source: The Columbus Dispatch
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