KANSAS CITY, Mo. — Huntington's and Alzheimer's — they’re progressive, chronic long-lived memory diseases.
Scientists are trying to understand them because they know the toll it takes on families.
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Researchers in our backyard at the Stowers Institute in Kansas City, Missouri, especially get that; their goal is to provide solutions and that’s what they’ve done.
Kansas City area families are taking notice and they want to share their story in hopes of helping support others.
At this point of LuWayne Younghan’s life, her memory has faded.
“It’s peaceful, we watch the birds — mom really enjoys seeing the clouds," Cindy Kunz, Younghan's daughter, said while describing activities the pair enjoy together.
But it’s the landscapes and airy pockets in Kansas that help Kunz paint her mom’s memories back together — a reminder of who she is.
“I just like being outside and being able to see the sky,” Younghan said.
At 96 years-old, Younghan's adoration of space and wonderment hasn’t changed, but her recollections have.
They’ve found security at Morningside Place, where everyone has a form of dementia.
“The difficulty for me and for the family has been some of her processing,” Kunz said.
Younghan's paintings of wispy clouds and the Flint Hill grasses cover her room at Morningside Place.
“She said she had a dream and felt compelled to paint these, and these were unlike anything she’s done before,” Kunz said describing paintings in her mother's room.
“This is one of our favorites,” Kunz said as she held up Younghan's hand painted nest with four eggs. “I could just see those birds making their nest.”
Younghan was a Kansas City Art Institute graduate, working with all mediums before moving onto fashion and interior design.
“That’s just me, I love to do it,” Younghan said.
Younghan went to Wyandotte High School and is a native Kansas Citian.
“We moved quite a bit when I was in junior high and high school, but mom always made sure our house was our home within the first week,” Kunz said. “She always had her paintings on the walls within the first week.”
Memory loss is something that impacts millions of Americans.
“We get distracted in everyday life, lose things, misplace things, put something down — it’s a fear," Kunz said. "And yet if they can make strides and put anything to curtail this to help everybody have a better life."
From the middle of Kansas City, scientists are doing that.
“We’ve been dealing with these diseases for so long and we’ve begun to accept them as a part of aging," said Randal Halfmann, scientist and associate investigator for the Stowers Institute for Medical Research. "Biologically, we know that’s not true."
Breakthroughs are happening and he says it pays to focus on basic science.
“Here at the Stowers Institute, we are doing things that are impossible in other places,” Halfmann said.
Stowers has not only made strides in cognitive function, but a groundbreaking medical breakthrough.
It’s Halfmann's main focus, motivation that he sees in his own grandparents.
“They’re beginning to struggle to remember things we talked about five minutes ago. When my kids interact with them, it’s not the person that I know,” Halfmann said. “I think losing your cognitive abilities is the worst thing I can think of. We all cherish our ability to see beauty in the world, to think, to interact with people.”
Memory diseases are an irreversible process. They involve a rogue protein that will duplicate and grow to whatever size it can. Like the first match that lit a wildfire.
For 12 years, Halfmann has been trying to find the spark.
“What makes them so hard to study is, how do we ever see the very first time this thing happens?” Halfman said.
It’s a defective structure that will seal the fate for someone.
“By the time an individual comes into the clinic and has one of these diseases, this exponential growth is already happening,” he said. “So it’s become clear over the decades that we need to go earlier and earlier in this chain reaction. Ultimately, the dream would be to see the very first thing that starts that reaction. If we can see that, then really we can stop it entirely.”
Seeing that was impossible, until now.
Halfmann figured out what starts the chain reaction — the spark that creates Huntington's disease.
“We narrowed it down to such an extent and this gives me chills — we couldn’t touch a single atom more on this molecule without breaking it,” Halfmann said. “We did that. We took one of those proteins that aggregate, that forms this amyloid that causes Huntington’s disease. We used our method and started tearing it apart.”
They have the blueprint, identifying the thing that starts the disease.
Now they just have to figure out how to stop it.
“The idea now is to try to develop a possible therapy that will cause these proteins to clump together and stop this nucleation event, this conversion event that’s going to ultimately start the chain reaction,” he said.
The goal is to help generations to come, and is hopeful for similar projects for the couple of proteins that cause Alzheimer’s and ALS, hoping for a similar story on that molecule.
As families like Kunz’s still navigate challenging times.
They’ve been able to find help and support for Younghan's memory care from Johnson County and other organizations.
“Don’t do it by yourself. Caregivers, you have to give yourself grace,” Kunz said. “I think that’s one of the most important things is, that there will be times when you question what’s going on, and your relationship has changed, but I’m still her daughter and she’s still my mother and we need to keep that context in the way it always be.”
From their favorite bench at Morningside Place, Kunz and Younghan will take the positivity of life and keep hope for the families to come.
“We think about sitting out here in the garden, we think about what’s happening now, looking at pictures — we can recall the times in the past we’ve had that are just wonderful,” Kunz said.
Chatting, painting the memories back into place.
“Every time we go out for a drive, we look at the clouds, I think it’s a sense of space,” Kunz said.
A reminder to not look past the present, staying in the moment to spark joy .
“Thank you for research, that’s all I can say,” Kunz said. “How we think, how we process and how we manage our whole life, so thank you.”
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