Terri Biloski is a business owner, personal trainer, and an avid runner. She also has a 50% chance of developing the same neurological disease that took her grandmother at age 60.

The Journey Towards 1000K

However, if it happens, she won’t be going without a fight. Terri has raised funds and awareness for Huntington’s Disease (HD) in the past by participating in 100-mile runs. After doing several of these, she wants to push herself to new limits, running farther and raising more money than ever before. Her run in May, which she has dubbed “10 Days at the Fair,” will be 1000 kilometres over 10 days, from May 9 to 19, and she hopes to raise $10,000 for the Huntington’s Disease Foundation.

“I wanted to do something crazy and amazing and push myself beyond the norm to raise funds for Huntington’s Disease,” Terri says. “Doing the 1000 kilometres is going to be a challenge. People have done it but it’s not a no-brainer.”

The run will take place at Three Days at the Fair, a yearly running event located at a fairground in Augusta, New Jersey. The one-mile track features an aid station with a full kitchen to keep multi-day runners sustained.

Terri after finishing the 50 Miles Race at the North Country Trail Run in Michigan.

Earlier this year, Terri participated in a six-day race for fun, and found that while it was a challenge, it’s the kind of running she’s cut out for. “My body handled it so well,” she says. When a friend suggested a ten-day race, she decided to do it for a good cause. Raising money for the Huntington’s Disease Foundation means that she’s contributing to finding a cure for her mother, a cancer survivor who is now in the early stages of HD, and maybe even herself, as the disease is hereditary.

A Progressive, Hereditary, and Not-Yet-Cured Disease

Huntington’s Disease is a brain disorder with symptoms that can be understood as a combination of Parkinson’s and Alzheimers. The brain slowly deteriorates, which affects all areas of the body as well as thinking, emotion, and memory. Those with HD often shake, are unsteady on their feet, and have trouble speaking.

“Currently, there are thousands of people across this country and many others that are fighting HD as it ravages their brains and slowly shuts down their bodies. There are also many more that have been touched by this disease as it affects a loved one or close friend. I run for them!” –Terri Biloski

Terri writes that in the later stages of the disease, her grandmother Bernice “was incapacitated to the point where she was no longer there but rather a shell of a magnificent woman.” Huntington’s Disease affects an estimated 3 to 7 per 100,000 people of European ancestry, and is less common in other populations.

Crazy About Running

To find a cure, Terri is determined to do what she can, and that is run. She’s been running seriously for about 20 years, and now spends most of her days running for work and fun, as she participates in run groups, does one-on-one run coaching, stroller bootcamps, and personal training. She says that she began like anyone else, training for a 5K.

“It pretty much killed me,” she says. “Turns out I didn’t die, so what am I gonna do? Then I did ten, then a half marathon, then a marathon, and it just kind of snowballed from there. Never at that point would I have wrapped my head around going for 100 kilometres a day for more than one day.”

The race will involve about 12 to 13 hours of running a day, which Terri admits will be pushing her limits, but it’s for a good cause. “What I’m trying to do is make some noise in the Huntington’s Disease world and also do what I love doing,” she explains. “It’s crazy, but it’s what I do.”

If you want to support Terri in her fight against this debilitating disease, visit her official fundraising page here. All funds will go directly to the Huntington’s Disease Foundation.