Vote for "Chelsea's Hope" in NASCAR/Toyota promotion to bring awareness to rare disease

Vote for Chelsea's Hope to bring awareness to rare, fatal disease
Only about two dozen cases in U.S., some 250 worldwide

By Kevin Spradlin
PhDispatch.com
MOUNT SAVAGE, April 22 -- All that's needed is a click. Maybe two.

With just two clicks of your mouse - the first being right here (the second to vote) - you can cast your vote for Chelsea's Hope - the pink car with hearts all over it.

It might not seem like much, but Tom Blankenship is confident winning Toyota's Sponsafy Your Ride contest will bring much-needed awareness to a disease that is shared by few in the United States.

One of them is his granddaughter.

Jessica Ambroe, now 17, was 15 years old when she was diagnosed with Lafora. Jessica went from being a stellar cheerleader, volleyball player and honors student in Johnstown, Pa.. Jessica now struggles with work on the fourth grade level.

Lafora is a genetic disease that, according to the National Institutes of Health, "causes seizures, muscle spasms, difficulty walking, dementia, and eventually death. There is currently no therapy that has proven effective against disease progression. Therapy is primarily palliative and aimed at reducing seizures."

There is no cure. Much to Blankenship's chagrin, there's also very little research being done on the disease. That's why, he said, it's so important that the pink No. 11 car, one of 10 in the running for the Toyota contest, win. The design is an original by Blankenship's nephew, Tim Blankenship of Berkeley Springs, W.Va. It beat out more than 39,000 other entries to make the final 10.

If it does win, the car will be driven by NASCAR's Denny Hamlin and compete in the NASCAR Sprint All-Star race on May 21 at Charlotte (N.C.) Motor Speedway.

"This exposure will bring much-needed attention and awareness to this rare disease, which is killing our kids," Blankenship said. "This is one of our best chances to gain that awareness. This is huge, considering this is a disease no one knows about."

Winning will result in "millions of people who know about it."

"We're not asking for money," he said. "We're just saying, your vote will make a difference."

Jessica lived with Blankenship and his family, formerly of Bruceton Mills, for the first five years of her life. There's "a strong connection" between the family, Blankenship.

Which makes it all the more difficult to understand how, "before all of this started happening ... She was one of those outgoing, vibrant kids. She had a seizure one day. And that's kind of what started it."

At first, the symptoms presented much like epilepsy - a common problem for this very rare disease. Jess was treated for epilepsy for up to nine months before a research in Toronto diagnosed Lafora.

Family, Blankenship said, "knew it wasn't just epilepsy. Other skills started being affected - school work. More seizures. She's stumble and fall. She was generally not as coordinated, not as mentally sharp. The honors classes were beyond her then. Michele, her mother, just kept pushing (for a more accurate diagnosis)."

Jess is at a time in her life when many of her peers' biggest problems include what dress to wear for prom and how to be safe on the road - and not break curfew - being a newly licensed driver.

None of that is a part of Jess's world. And a difficult part of the situation is that Jess herself doesn't completely understand what's going on.

"She can't really comprehend she can't do that," Blankenship said. "It's tough to watch her struggle to hold a fork and eat."

The disease starts shutting down neuron receptors. Jess now "can't think as well, can't walk as well."

When she is spoken to, "there is kind of a glazed look in her eye," Blankenship said. "when I'm with her on the telephone, I'll ask her a question (and) I'll think that she's not even there. If I ask her a question, she'll answer it. It just takes her about 30 seconds to process it."

But the outlook is grim.

At this point, Blankenship said, "it's always fatal."

A general timeline, once diagnosed, is eight to 10 years. Jess was diagnosed in February 2009 but showed symptoms up to a year earlier.

Word about the contest and top prize continues to spread through media reports, Facebook accounts, e-mail chains and corporate support. Blankenship said Savage Services - his employer, with offices also in Oakland and Frostburg locally - has been a huge help in supporting the word-of-mouth contest financially and by allowing posters to be displayed common areas, among other ways.