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'Longest Day' raises money for still-mysterious Alzheimer's

Katie Lefton, who studies neuronal networks, adjusts a yogi's pose in Forest Park during scientists' 'Active for AD' fundraiser on Thursday, June 21, 2018.
Sarah Fentem | St. Louis Public Radio
Katie Lefton, who studies neuronal networks, on Thursday adjusts a yogi's pose in Forest Park during scientists' 'Active for AD' fundraiser.

Thursday was the summer solstice, and the local chapter of the Alzheimer’s Association marked the occasion with a 24-hour fundraising blitz.

The organization’s Longest Day fundraiser is a national event that collects money to research the disease as well as support patients and their caregivers. Friends and family conduct sponsored activities such as bike rides, bowling tournaments and even drag shows.

Alzheimer's is a progressive, incurable neurological disease that causes memory loss, disorientation and lost language. Alzheimer’s Association St. Louis Chapter Vice President Peggy Killian said the fact the fundraiser falls on the longest day of the year isn’t an accident.

“The Alzheimer’s Association has selected the longest day of the year as a day for folks to do what they love to do – a passion project an activity they enjoy doing – in honor of those people who are living with the disease,” Killian said. “For those people, every day is the longest day. It’s really a symbolic tribute.”

Killian marks the day with a marathon 24-hour cab ride that takes her to Jefferson City and back. Starting at midnight on June 21, she hosts people in the back of the taxi who have been touched by the disease and listens to their stories.

“We combined an activity with what I liked to do – I like to talk to people and hear their stories,” Killian said. “It reminds me how passionate and committed people are … I talked to a gentleman who lost his father, and the fact they stay so committed, for me it’s always a good reminder of why we’re able to do what we do.”

Killian said money raised from the fundraiser goes not only to patients and research but also to resources for caregivers. “I would love for people to know if you’re living with a disease, there is help and there is support available.

She said the organization is one of the largest funders of Alzheimer’s research, along with the United States and Chinese governments.

In recent years funding for Alzheimer’s research has picked up; this year Congress passed a 30 percent increase— $414 million — in National Institutes of Health Alzheimer’s research funding. However, the amount still lags behind funding for cancer and AIDS research.

Alzheimer’s is a particularly difficult disease to study and decipher, scientist Jerrah Holth said. She researches neurobiology at Washington University’s Holtzman neurology lab. She and her lab mates conducted their own Longest Day fundraising on Thursday. Starting at 5 a.m., they raised more than $1600 for research by running, doing yoga and playing field hockey in Forest Park.

Holth said her grandparents had the disease, which helped inspire her to research dementia.

“We still don’t know exactly how the brain works,” Holth said. “It’s hard to fully understand neurodegeneration when you don’t understand the full aspect of the beginning state.”

Volunteers at K.A.R.E. camp in Ladue raise money at a lemonade stand during the Alzheimer's Association's Longest Day event.
Credit Sarah Fentem | St. Louis Public Radio
Volunteers at K.A.R.E. camp in Ladue raise money at a lemonade stand during the Alzheimer's Association's Longest Day event.

Alzheimer’s research is also a challenge because it can affect people differently, Holth said. She’s currently researching how lack of sleep affects the disease’s development.

While certain drugs can treat symptoms of the disease, there still isn’t a cure. Drugs targeting certain protein accumulation, called amyloid plaques, in the brain havefailed recent late-stage clinical trials.

There are bright spots in research, though. Drugs could potentially help people before they show symptoms of dementia. And research into other proteins, such as one called tau, could provide insights into the causes of the disease.

Kate Margulis, 11, hopes she and her friend’s contributions could help. She raised more than $250 with the volunteer group K.A.R.E. Camp’s lemonade stand.

“My grandma had it, my great-grandma, and it’s basically when you don’t remember things from your past and don’t remember people you’ve seen before,” Margulis said. “I hope the money helps make a cure for Alzheimer’s to make less people have it.”

Longest Day events continue throughout the weekend.

Follow Sarah on Twitter:@petit_smudge

Sarah Fentem is the health reporter at St. Louis Public Radio.