LEXINGTON, Kentucky (March 16, 2022) — The motivation that drives the work of Pete Nelson, MD, Ph.D., is personal. His grandmother, Sylvia Becker, died of Alzheimer’s disease, and he says his mother was then terrified of developing the disease.

“It gives me a purpose in life to attack this,” Nelson said. As an experimental neuropathologist at the Sanders-Brown Center on Aging at the University of Kentucky, he is driven by this motivation. “It’s almost every researcher’s dream to help identify and classify a disease, then go on and help defeat it.”

Nelson, who holds the RC Durr Foundation Chair in Alzheimer’s Disease in the UK, realized the first part of that dream in 2019, when a group of international researchers, co-chaired by Nelson, discovered a new form of dementia called limbic-predominant age. – TDP-43-related encephalopathy, more commonly known as LATE.

Symptoms of LATE mimic Alzheimer’s disease by causing memory loss and problems with thinking and reasoning in older people. But the researchers found that the brain affected by TARD looks very different from the brain in Alzheimer’s disease.

Now, a few years after that discovery, Nelson is working on the second part of the dream, with the world’s first clinical trial for LATE officially underway by his colleagues at the University of Kentucky.

Greg Jicha, MD, Ph.D., is director of clinical trials at Sanders-Brown and leader of one of the nation’s top dementia clinical teams.

“Our collaboration with basic scientists is, as always, essential. We couldn’t have done this without Dr. Nelson’s discoveries,” Jicha said. “For the very first time, we are looking at people in our research who we think are heading for Alzheimer’s disease, but now, by checking simple blood tests and sometimes cerebrospinal fluid, we may be able to to be said then that it looks like Alzheimer’s disease symptomatically…it is actually LATE.

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Ned and Lu-Ann Farrar married in 1984. They’ve done a lot in their nearly 40 years as a team, including raising two kids while pursuing meaningful careers. More recently, their teamwork has focused on Ned’s health.

In 2018, after retiring from teaching orchestra in Fayette County Public Schools, Ned was diagnosed with Alzheimer’s disease. He participated in an earlier study at Sanders-Brown and was in the process of evaluating another when they narrowed down his diagnosis to LATE, which Nelson and his team had just discovered.

“I asked Dr. Jicha if that was good news or bad news and he told us that whenever someone tells you that your brain isn’t full of beta-amyloid, that’s good news. thing,” Lu-Ann said.

Jicha then told the Farrars that there were plans afoot for a lawsuit regarding LATE and that he would keep them updated. About three months ago they got the call.

“Ned is the number one research subject, which is pretty exciting,” Lu-Ann said.

The Farrars have called Lexington home for decades, and they say it’s truly a blessing that the place making these groundbreaking discoveries and advancing them toward a potential cure is right in their backyard. Sanders-Brown not only helps assess and treat Ned, but he also counsels LuAnn by providing honest, knowledgeable, and compassionate answers.

“I’m not a researcher, but I’m sure you can’t fix something if you don’t know what it is. Research and clinical trials may seem like a long road, but it’s so fundamental to real, effective treatments,” LuAnn said. “Their commitment to curing these diseases runs deep, as evidenced by the work they do every day, including careful consideration of Ned, his diagnosis and his treatment options.”

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LATE is a disease that is estimated to affect 40% of people over the age of 85. Jicha says the drug in this research study may slow or possibly even stop LATE in its tracks as a disease-modifying treatment.

LATE’s discovery, which led to this lawsuit, is crucial to their overall fight to help people with their memory.

“Term-stage dementia, memory loss, and mild cognitive impairment are largely incurable, and it’s not just Alzheimer’s disease,” said Jicha, Robert T. & Nyle Y. McCowan on Alzheimer’s disease in the UK. “It’s about many different diseases and understanding that complexity helps us move forward with drugs that don’t just put a band-aid on memory, but rather start targeting the root of the problem.”

As with many diseases related to aging, people often ask, “Why did I get this?” Why me?” Jicha says that in most cases it’s a combination of things. There can be genetic factors that predispose the individual to develop dementia, hence why certain diseases can be seen in families.

There may also be environmental factors. Identifying these risk factors can help doctors understand what’s going on in the brain at the cellular level, and then potentially find a drug that already exists that influences the course of the disease – which is exactly what happens with research on LATE.

“Dr. Nelson’s genetic discoveries in his lab have shown us that there is a key part of the potassium channel that allows nerve cells to be healthy or diseased,” Jicha said.

Based on this knowledge, they identified a drug that is already in use around the world, except in the United States, where it is not yet approved. The drug has been used for heart disease for some time and researchers in the UK believe it may slow or even stop DEMENTIA.

“People who took this drug had reduced cardiovascular and cerebrovascular disease,” Jicha said. “They are healthier, they have a reduced death rate and a longer lifespan. For us, what is truly amazing is that modulating the potassium channel with this drug not only makes the heart healthier, but can also make the brain healthier. »

Getting a drug not yet approved in the United States into the country was a complex process. Both Jicha and Nelson are delighted to say that the drug is finally in the UK for their participants who appear to be at high risk for LATE.

Advances in science and treatments are not possible without volunteer researchers like Ned Farrar. Over the years, Sanders-Brown researchers have been fortunate to have thousands of such volunteers and hope to continue to attract new participants who want to know if they are at risk.

“It’s the best place to do clinical trials in the country,” said Nelson, who is delighted to know that this stage of his LATE discovery is in the very able hands of Jicha’s team in the UK. “Some research volunteers are going to be at risk for Alzheimer’s disease and they have options, there are also other people who are going to be at risk for other diseases, and they have very few resources in the world, but here they have an option. It’s amazing.

For those at risk of LATE, the UK is now the only place in the world where providers can do something about this trial. Participants in the 2-year study must visit the clinic approximately every three months. During these visits, clinical trial participants take memory and thinking tests and receive their dose of study drug. As in all studies, there is a placebo.

While the Sanders-Brown volunteer cohort is among the strongest in the country, more research volunteers are needed.

“We need to get more people online,” Jicha said. “Especially people over 75. We’re looking for the person who occasionally scratches their head and says, ‘Am I developing a memory problem?’ [We’re looking for] people, even with mild memory problems, who remain engaged in their daily activities; people who use their GPS a little more or who have to write everything down in their diary. These are the kind of people we want to reach because that’s where we can have the most impact.

Jicha and Nelson note how crucial it is to be proactive once you notice changes, even if they seem very small.

“Let us help you figure out why, because once we know why, whatever the cause…we have things to offer you that can help you,” Jicha said. “The sooner we can get people to stop the process, the more brains we can save and that’s just critically important.”

Nelson believes that even those at risk for LATE who receive the placebo during the trial will be better off participating under the care of Dr. Jicha, whom Nelson jokingly calls “Dr. Vitamin J.”

“He has an eight-month waiting list outside of clinical trials – there’s a reason for that,” Nelson said. “He is one of the best neurologists in the world. Everyone in this trial – whether they get a placebo or the drug – gets Dr. Jicha.

This new clinical trial for LATE is a perfect example of the ongoing collaboration in the UK, how Sanders-Brown is a world leader in Alzheimer’s and dementia research, and how the researchers share a common bond as teammates.

“We all struggle with these horrible diseases, and they’re a big enemy to have because they’re so serious,” Nelson said. “For me, it’s something spiritual. This passion is shared by others here in this center. We really care. This is our common ambition. If we could just start beating one disease after another… what a life well spent that would be.

This goal is also shared by those who volunteer to participate in the research.

“Would it be great if a Sanders-Brown patient was the first person to get rid of dementia?” said Lu-Ann Farrar. “It’s almost unbelievable. Ned and I are very clear about clinical trials – he may not get the drug, but we know someone will.

For more information on how to get involved in research at Sanders-Brown, call (859) 323-5550 or fill out the research interest form.