After watching her grandfather die of Huntington’s disease, Jolene Luther of Belgium dedicated herself to a career focused on finding a cure
Jolene Luther of Belgium, a senior at the University of Iowa in Iowa City, spent 10 weeks last summer looking at MRI brain scans of people who have the Huntington’s disease gene but weren’t showing symptoms.
She was looking for early markers of the disease that could help in the treatment of, and perhaps even a cure for, the genetic disease that has impacted her life since she was 11.
That’s how old she was when her grandfather William Holcomb — father of her mother Stephanie Bernander — tested positive for the degenerative disease that killed his brother. She saw her beloved grandfather, who died in 2011 and lived with her family for many years, deteriorate physically and mentally and vowed to do something to help families impacted by the disease.
“The mountain-climbing, long-distance biking, bread-making, swim-coaching man that everyone loved changed before our eyes, and there was nothing we could do about it,” Luther said in an article she wrote for the Huntington’s Disease Youth Organization.
“I was pretty young when he was his real self, but I have some wonderful memories,” she said.
Luther remembers how much fun it was camping during the summer with her grandfather, who lived in Lander, Wyo., until his condition deteriorated to the point that he needed help. Holcomb then moved across the street from her family in Port Washington until they built a home with an apartment for him in the Town of Belgium.
“With my grandpa living with us, there was so much love and support we wanted to give him, but we didn’t have the medical knowledge and resources,” Luther said.
“I think that’s when I realized I wanted to be that person to provide that knowledge.”
Luther, who will graduate with a degree in Spanish and pre-med studies in May, originally planned to specialize in treating people with degenerative disorders, such as Huntington’s and Parkinson’s disease, but the summer fellowship convinced her to go into research instead with the goal of finding cures and better treatments for such diseases.
She was awarded the first Donald A. King Summer Research Fellowship from the Huntington’s Disease Society of America Center of Excellence at the University of Iowa.
Her research involved looking for increased iron levels in the MRI brain scans of people who volunteered for the PREDICT-HD study. People with Huntington’s disease have high iron levels in their brains. Luther compared the iron levels in the study group with people who do not have the gene and those who showed symptoms of the disease.
If iron levels are higher in the study group than those in the control group or if iron increases as the disease progresses, it could provide a biological marker detectable in early stages of the disease.
It could track the effectiveness of a therapy or treatment to slow the disease’s progression and help lead to a cure.
“I wasn’t able to come to a significant conclusion during that time, but they’re continuing to use the data and I may co-author the study,” Luther said while visiting her family over Thanksgiving.
“I’m very satisfied with what I got done, even though I wasn’t able to complete the study myself. I got to see a different part of health care at the research center. Before, I saw the clinical side.”
As Holcomb’s children, Luther’s mother and aunt had a 50% chance of having the Huntington’s gene, but tested negative, so their children, including Luther and her brother Ronnie, do not have it.
Bernander is vice president of the Wisconsin chapter of the Huntington’s Disease Society of America.
After her grandfather died at age 75, Luther volunteered at the Huntington’s Disease Center to help with her grief.
She summarized medical journal articles published by the center to make them more understandable to the public. That work prompted her to apply for the fellowship.
Watching her grandfather gradually fade away was difficult, Luther said.
“He definitely still had his personality,” she said. “He was definitely trying to let us know that he was still in there.
“I was so young when his disease was progressing. He really didn’t get to know me in my adult life.
“This is kind of my way of getting to contribute something to him, even though he’s not here to see it. I think he’d be really proud of me.”
Image Information: Jolene Luther (right) and her mother Stephanie Bernander held a photograph of William Holcomb, Luther’s grandfather and Bernander’s father, on a bike trip before he was diagnosed with Huntington’s disease. Photo by Sam Arendt