WINSTON-SALEM, N.C. — A local woman is advocating for compassion and awareness of a neurodegenerative disease that runs in her family.
At 34 years old Lauren Holder makes all of her father Steve’s medical decisions. Steve is 62 and has Huntington’s disease. Holder works full-time and has two young children. She has tried putting her father in a nursing facility but COVID-19 is complicating the process.
“Not even 24 hours after he was there they called me and told me to pick him up because he was wandering and they were afraid of him going into an isolation room,” Holder said.
Finding care is tough.
“The process of getting care at-home is extremely hard. There are waitlists for care through Medicaid. It’s just been one battle after another,” Holder said.
Huntington’s affects a person’s ability to reason, walk and speak. Dr. Robert Friedlander is a neurosurgeon with UMPC in Pittsburgh. He studies the disease and how to treat it.
“It’s a chronic neurodegenerative process. Chronic just means it goes on very slowly over a long period of time,” said Friedlander, of NeuBase Therapeutics.
Holder’s father is at the point in his diagnosis where he often forgets a pandemic is going on. Seeing people in masks scares him.
“They don’t know who you are or what’s going on. It confuses people,” Holder said.
The stress of the situation motivates Holder to spread awareness and advocate for more research on Huntington’s. She too has the disease.
“I’ve always thought, OK, I want a cure but if we could just even get a treatment to make quality of life better it would be amazing,” Holder said.
“We’re talking about different options and different therapies where as of very recently there were no options,” Friedlander said.
Friedlander is researching a potential cure through NeuBase. So far they have been able to eliminate the broken gene in animals. It could take several years before the company runs trials on people.
Until then, Holder continues to fight for the care she says her father deserves.
“Constantly thinking how am I going to maneuver this, how am I going to make sure he gets the care he needs without him losing quality of life,” Holder said.
Holder’s daughter has been tested for Huntington’s and does not have the disease. She has not tested her son and wants to leave it up to him once he turns 18.