The sight of half a dozen white doves bursting forth from their container at the start of last year’s Walk to End Alzheimer’s in Washington brought tears to Barb Hellmann’s eyes — and the eyes of everyone present, she imagines.
They were tears of hope, said Hellmann, because that is what the doves represented.
Every year the Alzheimer’s Walk holds a Promise Garden ceremony, with flowers of different colors representing the different ways people are affected by Alzheimer’s.
Blue flowers represent someone who has Alzheimer’s; yellow means you are supporting or caring for someone with the disease;
Purple means you have lost someone to Alzheimer’s; and orange shows you support the cause and vision of a world without Alzheimer’s.
Last year, organizers added the color white to represent the hope of the first survivor of Alzheimer’s. To drive home the message even further, Hellmann, a volunteer committee member with Alzheimer’s Association, suggested they hold a dove release ceremony too.
“When the white flower went up, the doves shot out. It was a pretty powerful moment,” said James Schuenemeyer, walk director for the Alzheimer’s Association in the St. Louis metro area.
Research into Alzheimer’s disease is the cause of much of that hope, said Schuenemeyer. A lot of that research is happening locally at Washington University in St. Louis, where the DIAN (Dominantly Inherited Alzheimer Network) Two study is monitoring people with early onset Alzheimer’s.
“They are seeing a lot of promise with the medications they are using,” said Schuenemeyer.
Funding for much of that research comes from the annual Walk to End Alzheimer’s that is held each September in Washington.
The walk is the nation’s largest fundraiser for Alzheimer’s research and support services.
The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s research in the world. Only the U.S. government and the Chinese government spend more money on Alzheimer’s research, said Schuenemeyer.
Local Walk Has Raised More Than $1.4 Million
Last year’s event raised more than $211,000 from 900 participants.
That brings the total amount raised locally to more than $1.4 million, said Schuenemeyer, noting the walk began here in 2000.
That first year, the walk raised just $11,400.
Since then the walk has grown considerably each year, averaging around 100 new participants with each walk, said Schuenemeyer.
Although the walk is held in Washington, it actually encompasses all of Franklin County, as well as Gasconade and Crawford counties.
“Everyone across the tri-county area is welcome to be part of the walk,” said Schuenemeyer. “We are trying to reach as far as we can to let families know that we have an opportunity to be involved.”
The Washington area walk is one of the most successful that Schuenemeyer is aware of.
“Two of the top five teams in our chapter, which comprises all of Missouri except for Kansas City and a chunk of Illinois, are here in Washington,” said Schuenemeyer.
Those are the Hellebusch Family team, which last year raised $33,259, and the Martha and Lil’s Team, led by Pete and Judy Tobben, which raised $28,957.
“This tri-county area is exceptional, and to my knowledge, this walk raises more money per person than anywhere else in the United States,” he remarked.
The other top teams from Washington include:
• Patsy’s Prayer Partners led by the Sue Ewing family. They raised $11,775 in 2017.
• Walking in Wash MO, led by Phil Leathers’ Edward Jones office. They raised $7,875 last year.
• Bank of Washington, which included bank employees and their families and raised $6,321 last year.
How to Get Involved
Anyone can get involved with the Walk to End Alzheimer’s by forming a team or joining an existing team. There is no cost to forming a team or signing up.
The next step is to begin fundraising, which people do in a variety of ways, said Schuenemeyer. Some write letters, emails and post on social media asking family, friends and acquaintances for direct donations.
But many of the more successful teams organize fundraisers to boost their intake. They hold screwball tournaments and trivia nights, dartball games and T-shirt sales.
“We are open to all possibilites,” said Hellmann. “We want people to fundraise so we can find a cure for this disease.”
The Tobbens hold a party at their home that they call Moonlight Memories. The Hellebusches, who have several tool and die businesses in the family, reach out to their business contacts and their employees.
The Bank of Washington has T-shirts made featuring the names of employees’ family members who have been diagnosed with Alzheimer’s. They sell the T-shirts to their employees, who wear them at the Walk to End Alzheimer’s in support of their family members with the disease.
The majority of the teams who participate in the walk have no company support and are just families pulling together to make a difference, said Schuenemeyer.
“About 75 percent of the funds raised at the walk come from families like that,” he said.
About 25 percent of the funds raised come from corporate sponsors. Hellmann, who coordinates that effort, is hopeful that businesses preparing their budgets now for the coming year will remember the Alzheimer’s Association.
Companies can put together a team now or even start planning for fundraisers, said Hellmann.
The 2018 Walk to End Alzheimer’s will be held Saturday, Sept. 8, at the city pavilion. People can chose from two routes, either 1 or 3 miles.
2018 Goal Is $250,000
Hellmann and Schuenemeyer have set a personal goal for this year’s Washington area walk to raise $250,000. It’s a large number, they admit, but they know what the teams are capable of.
“Last year the goal was $186,000; Barb said it should be over $200,000; and then we raised more than $211,000,” said Schuenemeyer.
“We just drive hard, and everybody who volunteers we can’t say enough about, because they just give, give, give,” said Hellmann.
Volunteers are key to the walk’s success each year, both Hellmann and Schuenemeyer stressed. From the 35-member committee that plans the event to the 100 or so men, women and teens who help set up the night before and work it the day of, the volunteers are invaluable, they said.
If You Need Help . . .
Money raised at the Walk to End Alzheimer’s isn’t just used for research. It’s also is used to provide support for people with Alzheimer’s and their caregivers, said Schuenemeyer.
The Alzheimer’s Association has a help line (1-800-272-3900) that is available around the clock to provide answers and help connect people to services.
“That is the best place to get started,” said Schuenemeyer. “If anyone needs any help at all, that’s the place to start. Call that number, they will get you set up.”
All calls are kept confidential.
Hellmann said the helpline is just the thing people need when they feel overwhelmed and don’t know where to turn.
“People don’t know how to get resources. They are frozen and scared. They don’t know what to do, and they don’ t want to admit it, but there is help out there,” she said.
Along with the helpline, the Alzheimer’s Association website, www.alz.org, is another great resource, and Hellmann recommended several books about Alzheimer’s:
“36 Hours in a Day,” “Joy in the Moment” and “Alzheimer’s for Dummies” are “all good reads,” she said.
There also is an active caregiver support group that meets the fourth Tuesday of every month from 2 to 3 p.m. at the Washington Public Library.
Diet, Exercise and Brain Games
There are no guarantees in protecting yourself from developing Alzheimer’s disease, but there has been research out of Scandinavia indicating that eating a modified Mediterranean diet with healthy fats and exercising to the point that you break a sweat can lead to better cognative ability and a decrease in the onset of Alzheimer’s, said Schuenemeyer.
While there are some hereditary cases of Alzheimer’s disease, those only account for 5 percent, said Schuenemeyer.
Playing “brain games” also can be helpful, but only up to a certain point.
“When you are first learning them, they are beneficial. That helps build neuropathways. But once it becomes repetitive, it no longer has the beneficial effect,” said Schuenemeyer. “You need to be learning new things to build neuropathways. Learning new things helps your mind build more neuropathways. That really does help.”
Breaking Up Plaques
One study that is getting a lot of attention in Alzheimer’s research is in Australia where doctors are using targeted ultrasound to break up the beta amyloid plaque buildup in the brains of people with Alzheimer’s.
“It has progressed through earthworms, mice and sheep, and they are getting to humans to experiment,” said Schuenemeyer.
The cause of Alzheimer’s is the buildup of beta amyloid plaque in the brain that clogs the neuropathways and the tao proteins that tangle the neuropathways causing cell death.
“Those two things together make Alzheimer’s happen,” said Schuenemeyer. “What the catalyst is for that, we don’t know yet.”
Beta amyloid buildup begins when a person is in their 30s, 40s and 50s, but around age 65 is when Alzheimer’s typically is revealed.
“We don’t know what switches it, because the brain can be really full of that plaque, and still a person has fully functional cognitive ability, but then something happens,” said Schuenemeyer.
To read more about the vast number of research being done for Alzheimer’s disease, go to www.alz.org.