OAK CREEK, Wis. — Carley Renner often goes on walks with her father, Chris Guzikowski.
Guzikowski has Huntington’s disease, a condition that affects motor and cognitive skills.
According to the Huntington’s Disease Society of America, the disease is a neurological condition that affects 41,000 Americans. An additional 200,000 people are at risk of inheriting the disease.
That’s why Renner wanted to find out if she would get Huntington’s one day. After testing, she found out she was positive.
“It’s just a matter of age or onset of symptoms that varies from person to person. It’s typically around the age of 40s and 50s is the start of the symptoms,” said Renner.
She said it was especially important for her to get tested because she and her husband are looking to add another member to their family.
“We know what gene is affected, so that makes the process of PGT-IVF so you can go through IVF where they retrieve the egg and everything and create the embryos and they are able to test the specific genes in the embryos,” said Renner. “And so this is a way to make sure your baby doesn’t have Huntington’s disease.”
This research, along with her dad’s diagnosis, is what inspired her to create the Guzi’s Hunt for the Cure Foundation.
Every year, the foundation hosts a fundraiser, the Guzi’s Hunt for the Cure 5k, at Lake Vista Park in Oak Creek.
Renner said they hope to help other families end Huntington’s disease in their family bloodlines.
“The purpose is that we are going to be raising the money that will provide grants to families to be able to go through the IVF process with the genetic testing with the embryos. That can be anywhere up to $40,000, so it can be a big financial undertaking for people,” said Renner.
While future generations may be spared from Huntington’s disease, there is no cure for those that already have it. Guzikowski has had the disease for a few years now.
He said routine tasks continue to get harder, which led him to retire from his job last summer.
“I’m still driving but I’m just driving short distances and familiar routes and as far as trying to process things, you know, things are slowly slipping away a bit, but for the time being, I’m just going to make the best of it. All we can do is march forward,” said Guzikowski.
As Renner sees her father struggle with the condition, she said it weighs heavily on her.
“Nobody should have to deal with this," said Renner. "And kids and people my age should not have to think about, ‘am I going to have this disease, when am I going to get it, how much time do I have left?’ I’m married, newly married within the last few years, and I now have to think about this with my husband. It’s just really heartbreaking.”
It’s why Renner said she’ll continue to do everything she can to hunt for a cure that not only helps her family, but other families as well.
The 2023 edition of Guzi’s Hunt for the Cure will take place on Sunday at Lake Vista Park at 9 a.m. You can register, here.