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Family fighting against rare disease through annual fundraiser

One Eastern Iowa family is fighting back against the rare disease, CADASIL, with an annual fundraiser. 

CADASIL is a serious inherited disease that is often misdiagnosed as multiple sclerosis. The disease attacks the white matter in your brain and causes strokes, seizures, dizziness and migraines. 

Three members of the Carney family are battling this rare disease, and now, the entire family is bringing awareness about it to the community. 

The Carney family’s first encounter with CADASIL happened in 2012. Craig Carney suffered from a stroke and seven seizures before he was diagnosed with the rare disease. Almost 10 years later, the strokes and seizures continue, which impact his memory and motor skills. The Carneys said Craig’s future is unknown, and his condition will never get better.

Since then, two other Carney family members have been diagnosed with CADASIL.

"Being Irish – we’re going to fight back. We maybe can’t do anything about Francis and his family, but we want to figure out a way to get awareness and eventually a cure for this disease," Gary Carney said. 

The Carneys are holding their first annual fundraising event during the last weekend of July.

On Saturday July 28, there is a bowling party at Maple Lanes in Waterloo from 11 to 4 PM. The cost is $15 per person for shoes and a day of bowling. 

The big event will be at Cedar Falls AMVETS Post 49 from 11 to 4 PM on July 29. There will be a free-will donation meal, a silent auction, live music, a 50/50 raffle, and a classic and antique car show. 

All proceeds from the fundraising events will go to cureCADASIL. This foundation raises awareness about the disease and funds research.

If you are interested in donating to this fundraiser, you can send donations to:

Carney cureCADASIL PO Box 283

Cedar Falls, IA 50613-0283

Or, you can visit this Facebook page:


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