The Summer Solstice may have passed for this year, but the fundraising hasn’t stopped the Alzheimer’s Association’s Longest Day campaign. Two guys from Peoria Illinois, Bob Fussner and Jody Summers, are hosting the first Vintage Bike Ride to End ALZ.
Mr. Fussner is an avid collector of vintage bicycles, and Mr. Summers enjoys riding. Dementia and Alzheimer’s have touched both of their families. So, they thought why not DO something they love FOR someone they love, and raise some money to help fight a disease that has touched so many lives, not just in Illinois, but worldwide. The two hosts state that although the ride is themed as vintage bikes, all types of riders and bikes are welcome.
The event will take place on Saturday, August 19, 2023. Registration and packet pick up will start at 11:00 am next to the water tower at Junction City Shopping Center in Peoria. The ride will leave Junction City at noon, head south on the Kellar Branch Greenway bike trail, and proceed to Oliver’s in the Heights. After a quick stop, they will proceed down Prospect Ave. in Peoria Heights to Pour Bros. Taproom for a mid-ride break. After the break, riders will cross Prospect and jump back on the bike trail to head back to Junction City.
“We realize this is a short ride,” says Summers, “but vintage bikes are heavy, and it may encourage families with smaller children to ride the shorter distance.” They will have vintage bikes on display and hope to have snacks, drinks, and music if ridership numbers increase.
Registration for the ride is $30.00 per rider. T-shirts and goodie bags will go to the first 50 registrants. You can also register at the time of the ride at Junction City. Several outstanding businesses have also donated to the ride including Russel’s Cycling and Fitness, The Tavern on Prospect, Junction City Pub, Trefzger’s Bakery, Oliver’s in the Heights, White Income Tax, and Olio & Vino.
Although this is our first try with a fundraiser, we hope it will develop into a larger event with a bicycle swap meet, live music, and food vendors in future years.
For more information, please contact Jody Summers at (309) 472-3189, or j.summers64@yahoo.com.
Siblings Chase, Cody, Hallie, and Jacob ran the Bank of America Chicago 2022 Marathon on team ALZ Stars to raise awareness and funds for a cure. The four Wombacher siblings totaled 104.8 miles—not including the many miles spent training and completing previous marathons.
Every stride is meaningful for the family. They ran in honor of their Grandma Toot, who is currently living with Alzheimer’s disease, and their Great Aunt Donna, who passed from the disease in 2018.
The Wombacher siblings shared, “We went the distance with the Alzheimer’s Association ALZ Stars®, a program to advance the care, support and research efforts of the Association. We ran not just for our Grandma Toot and Aunt Donna, but for all those who have been affected by this terrible disease both directly and indirectly.”
Their Grandma Toot has been living with Alzheimer’s disease for some time. Cody shared about his grandma, “When Grandma Toot was diagnosed with Alzheimers, it hit hard. She was always so strong and independent. Growing up across the street, she was always the first to see me when I arrived home from Chicago and the last to say goodbye before heading back.
“Grandma Toot is a fighter and a competitor,” he shared. She taught the four siblings and their cousins how to be good competitors, starting at the golf course she owned.
”We are lucky enough to still have Grandma Toot with us today but sadly Alzheimers has taken away so much of what we know and love about her…Though she is not the same person she used to be, getting to see those small glimmers of her personality, feistiness and humor come out is truly the greatest feeling in the world!”
In addition to their grandma’s journey with Alzheimer’s, the Wombachers lost their Great Aunt Donna to the disease in 2018. She was like another grandma to the siblings. Having no children of their own, they spoiled the four kids generously.
The Wombacher team, nicknamed Wombie Runners, includes novice and experienced marathoners alike. This is Hallie and Jacobs’ first Marathon, Chase’s third, and Cody’s twelfth marathon! Chase and Cody live in Chicago; Jacob and Hallie live in Iowa City, IA. When they’re not training, they spend time with their families. Some of their favorite post-run treats include chocolate milk, cold beer and Tootie Burgers—a family staple of legendary proportions.
“Running has always been a part of our family,” shared Cody. “And what better way to honor and help bring awareness to this disease than to run a marathon together.”
We need your help to make a difference in the lives of your members
People facing Alzheimer’s and dementia often turn to their faith communities for emotional and spiritual support. People who have Alzheimer’s disease or related dementia, especially those raised in religious households, are uplifted by worship services and visits. They often have the desire to continue to partake in church activities.
Family members also have spiritual needs. Caring for a loved one can last for years, leaving the caregiver weary, isolated, frustrated, and depressed. At the same time, they may grieve the many losses of this journey. The Alzheimer’s Association recognizes the importance of spirituality and has developed programs to partner with congregations providing education and support to their members.
The Alzheimer’s Association partners with faith-based organizations and communities to help provide resources and education, and raise awareness of the disease. We do this through collaborative action plans which are organized by the faith organization’s leadership and our Alzheimer’s Association Illinois Chapter team. If you are interested in partnering with us, please reach out to Amelia Garza at amgarza@alz.org.
PURPLE SUNDAY
Purple Sunday is a community event to promote awareness of Alzheimer’s disease in communities through houses of worship.
By hosting a Purple Sunday event, churches can help their congregations learn more about the difference between Alzheimer’s and dementia, risk factors, warning signs, the importance of an early diagnosis, the diagnostic process, and helpful programs offered by the Alzheimer’s Association. Each faith-based group hosts Purple Sunday in different ways including:
• Providing materials on a table
• Devoting one sermon or bible study to issues surrounding faith, aging, and dementia
• Asking members to wear purple during a Sunday service or faith event
• Praying with a purpose circle for those affected by Alzheimer’s and dementia
• Hosting an Alzheimer’s Association education class or awareness presentation
If you live or worship in Illinois and are interested in hosting a Purple Sunday at your house of worship, contact the Alzheimer’s Association’s Illinois Chapter at 800.272.3900 or pbennett@alz.org for more information.
There are good days and bad days for Danielle Spaar. She is a caregiver to her parents, including her father who is living with Alzheimer’s disease. A former Marine, her father “was the one everyone could depend on,” said Danielle. “He was the calm parent to talk to about your problems.”
Danielle and her father had a difficult day recently when they returned home from a family vacation. Their routine was out of sorts, and emotions were high on both sides. However, the challenging day grew into a useful exercise in vulnerability for Danielle.
“As a very independent person myself, I can’t imagine how he is feeling. Being so out of control of the things happening to him…I’m still glad I let him see ‘behind the curtain of strength,’ just for a moment,” shared Danielle.
Danielle grapples with being open about her struggles as a sandwich caregiver—caring for a parent and child at the same time—and describes how vulnerable she feels as both a mother and a daughter. Danielle describes the first time that her daughter saw her cry, and how this experience caused her to reflect on what it means to be a parent and to show your emotions.
Danielle reflects on the man her father was before his illness—a “ripped” young man who enjoyed exercise and entered the Marines in the middle of culinary school. Now, she notes that her father finds comfort in the simple things. He enjoys listening to music from the 60s and watching old movies with his family. Danielle and her father enjoy a routine of morning walks with Danielle’s labradoodle, Tony, as they engage in “familiar” conversations.
Danielle recalls times when her emotions got the best of her and she lashed out towards her father in frustration. She has an important reminder for other caregivers: “Don’t bottle all [of] that hurt inside.”
Through the Alzheimer’s Association, Danielle benefited from the Care Consultation program and Early Stage Support Group. She sees parallels between the struggles that she experiences as a caregiver for her father and managing the behaviors of her teenage children.
For now, Danielle plans to continue making memories with her father—“ones he will not remember, but I will,” said Danielle. Her story highlights the complexity of staying compassionate with a loved one living with dementia and the fatigue that can accompany being a caregiver. Feelings of uncertainty, frustration, and sadness are common, and it is important to seek emotional support as needed.
The balance of caregiving for a parent while parenting children is complex. Resources and support are available. Find a support group to connect with individuals who know what you’re going through here. Other resources are available at alz.org/illinois/helping_you.
Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer
As temperatures rise across Illinois, extreme heat can have a significant impact on everyone’s safety, but it can be especially stressful and confusing for individuals with Alzheimer’s and other dementias. Alzheimer’s disease causes a number of changes in the brain and body that may affect their safety, including changes in sensitivity to temperatures.
Today, there are more than 6 million Americans living with Alzheimer’s disease, including 233,000 in Illinois. Taking measures to plan ahead for weather changes, like extreme heat, can prevent injuries and help a person with dementia feel more relaxed and less overwhelmed.
“People living with Alzheimer’s and other dementia can be vulnerable during extreme weather because their judgment may be impaired and they may be unable to communicate discomfort,” said Delia Jervier, Executive Director of Alzheimer’s Association, Illinois Chapter. “It’s really important to take extra precautions with these individuals when there is extreme heat or other excessive weather conditions.”
The Illinois Chapter of the Alzheimer’s Association is offering important safety tips for caregivers and families facing Alzheimer’s and other dementias to prepare for the hot summer months:
Make a plan. Family and friends should prepare accordingly and make plans to regularly check in on a person living with Alzheimer’s disease and other dementias during extreme heat. Arrange alternative plans for cooler spaces, if air conditioning is unavailable, and dress in loose, light clothing.
Pay attention at night. Keep people living with Alzheimer’s disease and other dementias cool by using fans and keeping the air conditioning on. At night, low temperatures can still exceed 75 degrees with little fluctuation in humidity levels, making for difficult and exacerbating sleeping conditions, heightened anxiety and increased agitation.
Prepare for behavioral challenges. Research shows that heat can increase agitation and confusion in people. Try to remove behavioral triggers by addressing the person’s physical needs related to the heat, then tending to their emotional needs.
Stay hydrated. Increased water intake is essential to maintaining good hydration and health during extreme heat. Know the signs of heat exhaustion to avoid heat stroke. Dehydration may be difficult to notice in a person living with Alzheimer’s disease and other dementias, as signs like increased fatigue, dry mouth and headache may be difficult to detect. People taking diuretics, sedatives, or certain heart medications may not sweat as much as others, but this does not mean that they are not hot.
Stay indoors and out of the sun. Heat stroke and heat exhaustion may occur in extreme heat conditions but symptoms may be difficult to detect in people living with Alzheimer’s and other dementias. Keep individuals cool by using air conditioning at home or moving to a public place, such as a senior center or shopping mall. If you must go outside, be sure to dress appropriately, loose, light clothing, wear a hat, and apply sunscreen with an SPF of at least 30 or higher.
Stay informed. Keep an eye on local weather forecasts. High temperatures are not the only cause for concern. Humidity and air pollution indices can cause breathing difficulties. The person should be monitored regularly and seek medical attention if symptoms arise of dehydration, heat exhaustion, or heat stroke.
The Alzheimer’s Association is here to help families take measures to prepare for and cope with such extraordinary circumstances. For more information, visit alz.org or call the 24/7 Helpline at 800.272.3900.
How did I get involved with the Walk to End Alzheimer’s? I first got involved in the walk when my grandfather (Dick Briel) my mom’s father was diagnosed and passed away in 2007 from Alzheimer’s. I really got involved when my mom was diagnosed in 2018. I was living in California and got a call that my mom was slipping and starting to be very forgetful. I packed up and moved in with my mom and my stepdad so I could help in whatever way. My mom has Early onset Alzheimer’s and was only 57 when she was diagnosed at the Mayo Clinic in Minnesota. I called the Alzheimer’s Association frequently to talk to someone who knew what I was going through and to ask questions, I got advice on joining a support group in my area and then I decided to join the Alzheimer’s Walk committee. It has been so amazing having the Alzheimer’s Association in my back pocket when I need to talk, get advice, or ask a question. My Committee has my back and has been a great sounding board. The committee head for the Dupage Walk Alison McEwen met me for coffee and we found out that both of our stories were very similar about our parents.
How has Alzheimer’s disease impacted your life?
It’s hard to put into words how much this disease has impacted me. A few words to describe my mom are Role Model, Amazing Business Women, Great Friend to all, my rock, and my best friend. My mom was diagnosed when she was at her prime and only 57. It’s just way too young and it is affecting people younger and younger every day. I did have the privilege of being my mom’s caregiver for close to 4 years. It was some of the hardest and best times that I have ever had. The hardest day was by far August 1, 2022 when we had to place my mom in a memory care facility. It was getting dangerous for her and we knew it was the best thing to do. My mom is currently living her best life in memory care in Aurora, IL we get to visit her as much as we would like and she lights up when she sees us. She still remembers the close family and it’s amazing to see her eyes look up into yours.
Why should others raise funds and awareness for Alzheimer’s Disease? I think it is extremely important that we bring awareness because this disease is taking too many people too fast. Many people think it’s just an old person’s disease and that they are going to die anyway but that is not the case. It is heartbreaking for the person and the family members to watch their loved ones forget you, and everything around you. It’s so hard to watch them be confused and flustered. I do my part to speak up about it and raise awareness. This year I worked really hard with a Bowling fundraiser where the proceeds went to my Walk page. I was able to raise $2,000 just from the fundraiser and have one more in August. I work hard to advocate for my mom and for this disease. People need to know Alzheimer’s kills more people than breast cancer and prostate cancer combined. Alzheimer’s also affects Women more than it does men.
Is there anything additional you would like to share to raise awareness? I just want to add that it was really hard when I was being my mom’s caregiver. I worked part-time and took shifts with my stepdad, we worked well as a team. My mom’s name is Sue Vidmar and my name is Shelbi Vidmar my stepdad is John Postlewaite. I just want people to help with raising money because we need to find a cure for this disease. We need survivors. My mom is currently 62 and is for the most part doing well. She is in a wheelchair now but can take a few steps on her own. She loves visitors, treats, and being with her family and friends.
CONTACT: Lionell Martin, Alzheimer’s Association – Illinois Chapter, 773.593.4211, lrmartin@alz.org
The Alzheimer’s Association celebrates today’s U.S. Food and Drug Administration (FDA) action to grant traditional approval of Leqembi™ (lecanemab, Eisai/Biogen) for the treatment of early Alzheimer’s disease with confirmation of elevated amyloid beta. This is the first traditional approval of an Alzheimer’s treatment that changes the underlying course of the disease.
“This treatment, while not a cure, gives people in the early stages of Alzheimer’s disease more time to maintain their independence and do the things they love,” said Joanne Pike, DrPH, Alzheimer’s Association president and CEO. “While we continue efforts to discover new targets and test new treatments, people living with this fatal disease deserve the opportunity to discuss and make the choice with their doctor if an FDA-approved treatment is right for them.”
Leqembi works by targeting amyloid beta, the primary component of amyloid plaques, which are a disease-defining hallmark in the brains of people with Alzheimer’s disease. Well-conducted clinical trials clearly demonstrate that removing amyloid from the brain provides measurable, meaningful benefit in people with early Alzheimer’s. In a Phase 3 clinical trial, Leqembi delayed cognitive decline by 5.3 months compared to placebo after 18 months of treatment, at a time when such delays are most valuable to the individual. Further delays in progression are anticipated with extended time under treatment. It is administered twice monthly through intravenous infusion. Leqembi has been on the market since January 2023, when it received accelerated approval from the FDA. However, to this point access has been blocked by Medicare coverage policies.
“This is a momentous day for people living with early-stage Alzheimer’s and their families,” said Hugh Courtney, 60, who was diagnosed with Alzheimer’s disease in 2020. “I was in the Leqembi clinical trial, so I am really excited about today’s FDA approval. It gives others living with early-stage Alzheimer’s a chance to pursue treatment that may slow progression of their disease.”
With FDA-approved treatments now available, it is more important than ever that patients and their families have informed discussions with their health care providers about the potential risks and benefits of treatments.
The FDA included a boxed warning in Leqembi’s label to raise awareness about specific side effects and at-risk populations. Side effects include amyloid-related imaging abnormalities (ARIA), typically a temporary swelling and/or bleeding in certain areas of the brain that usually resolves over time. ARIA does not usually cause symptoms but in a low number of cases can be serious. The FDA also recommended, but did not mandate, genetic testing. People with two copies of a well-known Alzheimer’s risk gene may be more at risk of ARIA.
“The FDA’s consideration in the label will help ensure clinicians monitor safety closely — this is a good thing. However, the boxed warning should not keep clinicians and patients from having the conversation about the benefits and risks of approved treatment options,” said Maria C. Carrillo, Ph.D., chief science officer, Alzheimer’s Association.
“More treatments that target the disease from all angles are needed,” Carrillo added. “We look forward to hearing results from a variety of Alzheimer’s and dementia therapies next week at the Alzheimer’s Association International Conference (AAIC), July 16-20 in Amsterdam.”
The Alzheimer’s Association is committed to working with health systems and providers to ensure they have the resources and infrastructure to meet the needs of their patients. Participation in the Alzheimer’s Association’s Alzheimer’s Network for Treatment and Diagnostics (ALZ-NET), which will gather real world data on how people from all backgrounds and communities respond to novel FDA-approved Alzheimer’s therapies, is encouraged by the FDA in the prescribing information for Leqembi.
With this approval, early detection and diagnosis are even more critical to ensure individuals receive the most benefit at the earliest point possible. If you or a loved one is experiencing memory changes, the Alzheimer’s Association strongly encourages speaking with a health care provider for a thorough evaluation and diagnosis and to discuss treatment options. For more information on diagnosis or to find a local health care provider, visit the Alzheimer’s Association at alz.org, or the Helpline 24/7 at 800.272.3900.
More than 6 million Americans are living with Alzheimer’s disease – a leading cause of death in the United States. Additionally, more than 11 million family members and friends provide care to people living with Alzheimer’s and other dementias. In Illinois alone, there are more than 233,000 people living with Alzheimer’s and more than 314,000 family members and friends caring for them.
You can find more information at alz.org/facts. Support and information from the Alzheimer’s Association are available for free anytime, day or night, for individuals with Alzheimer’s disease and their caregivers at 800.272.3900.
About the Alzheimer’s Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead the way to end Alzheimer’s and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer’s and all other dementia®. Visit alz.org or call 800.272.3900.
