By Madeleine Reber

PROVO- Jenny Bandley is a runner. But right now she’s training out of her comfort zone for her first marathon. Jenny is running the New York City marathon for those who have Huntington’s disease.

Bandley’s dad has Huntington’s disease.

Brandley says, “When I’m running, I think about my dad and how badly I wish he could run with me.”

Huntington’s is a neurodegenerative disease that slowly breaks down nerve cells in the brain. People don’t begin to see symptoms until their 30s or 40s. Symptoms like muscle spasms, memory loss, and difficulty thinking are common.

Bandley started to noticed small symptoms in her dad a few years ago. “I remember being in high school and googling what this could be and stumbling upon Huntington’s disease,” she says.

A year later, doctors confirmed Jenny’s Web MD predictions.

The scariest part of Huntington’s is that the disease is genetic; Jenny and her two brothers have a 50/50 chance at having it.

Bandley says getting tested is a difficult decision to make. “If people aren’t in the mental state of handle that info, it can be really derailing,” she says. 

It’s also expensive. But after meeting with genetic counselors and a social worker, Bandley decided she wanted to be tested.

Bandley tested positive, and she says that day is a blur.

“I just remember like the walls crashing in on me,” she says. After months of processing, she got an invitation to raise money for the HDSA foundation to run the New York Marathon.

Bandley posted a video asking people to donate so she could run. The foundation had a minimum of $3,000 raised. Bandley set a higher goal, and through events, bake sales and reaching out to family and friends, she reached it, totaling $5,010 donated.

Currently there is no treatment, but in just a few weeks, Jenny will run for her dad, herself and the nearly 30,000 people living with the gene.