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Fundraisers benefit Steamboat residents with rare diseases

Tom Ross
Meredith Herndon sits in the kitchen of her Steamboat Springs home Wednesday afternoon. Herndon suffers from atypical trigeminal neuralgia, an illness that sends near-constant waves of pain through the nerves and muscles in her face.
John F. Russell

— The first days of March bring a couple of fundraisers — one Thursday and one Saturday — for Steamboat Springs residents living with rare medical conditions.

Thursday’s fundraiser featuring music, fun and prize drawings is being held on behalf of Yampa Valley Medical Center cook Meredith Herndon, who will fly to Pittsburgh later this month for brain surgery at the University of Pittsburgh Medical Center. It’s hoped the surgery will alleviate a rare nerve disorder called atypical trigeminal neuralgia.

Herndon has worked at the hospital for five years and has endured frequently debilitating pain for four of them, she said Wednesday.



“Hopefully, in two weeks that will be taken away,” Herndon said. Her surgery is scheduled for March 14.

ATN is thought to be related to a buildup of pressure created by blood vessels on the trigeminal nerve deep in the skull, according to a Web page created by the University of Manitoba. The condition can be related to previous surgeries and sometimes is triggered by environmental factors ranging from noise and stress to diet. The condition also can be brought on by a tumor or by plaque buildup related to multiple sclerosis.



Herndon said she thinks her ATN was brought on by facial surgery. She’s had numerous procedures since to relieve the symptoms. Sixty percent of the cost of this month’s nearly $100,000 procedure is covered by her health insurance.

Herndon’s colleague in the kitchen at the hospital, Diane Townes, said her friend has kept up a brave front through her multiyear ordeal.

“Meredith is an upbeat person with a great personality,” Townes said. “The hospital has been very supportive, and the response of the community has humbled me. That’s what you expect from Steamboat.”

Townes said she has accumulated so many gift certificates from local businesses and organizations from jewelry to haircuts, bowling and an oil change, she expects to be calling out prizewinners every 10 to 15 minutes during the benefit.

Finding a cure

The inaugural Steamboat Springs hydrocephalus fundraiser in 2011 raised $42,000 to support research to find a cure for the condition. The local effort has been led by the Karch family, of Steamboat Springs. Christian and Laura Karch’s 7-year-old daughter, Sofia, has hydrocephalus.

They hope to raise $55,000 this year.

“One hundred percent of the proceeds from this event go directly to support hydrocephalus research,” Christian Karch said.

Hydrocephalus is a neurological condition that prevents people from properly regulating the cerebrospinal fluid that nourishes and cushions the brain. When the disorder allows too much fluid to build up, the pressure generated on the brain can be life-threatening.

According to a fact sheet prepared by the Hydrocephalus Association, the number of military personnel returning from war zones with head injuries significantly is increasing the number of Americans diagnosed with the condition.

There have been no significant improvements in methods of treating hydrocephalus, and almost 8,000 babies are born with hydrocephalus annually.

Saturday’s fundraiser includes a snowshoe and cross-country skiing races, lunch, live music, prize drawings and a silent auction. The cost is $50 per person, which includes an event T-shirt, or $75 per family.

To reach Tom Ross, call 970-871-4205 or email tross@SteamboatToday.com


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