Many people dream of running a marathon. Steve Barbus had loftier goals. He began long-distance running at age forty and has covered over a thousand miles between racing and training. Steve ran his 30th marathon in October 2021 with team ALZ Stars in honor of his mother, mother-in-law, and two aunts. He resolved to make every step count in the fight against Alzheimer’s disease. Steve discovered a love of running in high school. He ran his first marathon in Chicago in 1991. “The crowd carries you in Chicago,” says Steve. He recalls the excitement of that first race running along Lake Shore Drive and Lake Michigan. Since that day, Steve has run a marathon almost every year. The Cadillac, Michigan resident returned to the Windy City thirty years later for one final race. Steve at the 2021 Bank of America Chicago Marathon “I promised myself—as decades went by—I’ll see if I can do them in my 60s, and then 70s,” Steve says of running marathons. He decided to “put some purpose” behind his passion, so he found the marathon’s Charity Program and supported the causes close to his heart. He first ran to raise money for leukemia research, from which his father passed away. Later, he joined the Alzheimer’s Association ALZ Stars. When his mother developed Alzheimer’s, it was challenging for Steve and his family to see her dementia symptoms. Steve would visit his mother on weekends and observe changes in her memory and behavior. “She was always such a reasonable person,” shares Steve. He was baffled by the confusion she started to show. Steve tried correcting her until one day his sister broke the news to him: “This is a different person now,” she told him. Their mother was no longer the steadfast figure they remembered growing up. That was the difficult moment Steve had to face the reality of his mother’s condition. Eventually, it was too dangerous for Steve’s mother to live on her own. The siblings called a “family sit-down” to discuss moving her somewhere she would be safer and more comfortable. Steve had watched other families struggle with caring for a loved one living with Alzheimer’s. He was thankful for how his own family unified and responded. They eventually moved their mother closer and into a care facility, where she passed away from complications due to the disease. Steve joined the Alzheimer’s Association’s ALZ Stars to prevent other families from facing the same difficulties. Steve and hundreds of other athletes raised funds and awareness for dementia care, support and research. Advancing research is key for Steve and his family. His wife, Sue, is a physician; they both understand the need for prevention, diagnosis and a cure. Steve and his wife, Sue Running for a charity gives Steve an “incentive to get out there” and motivates him as he trains for every race. Training for a marathon can feel like a “pretty selfish act” according to Steve. He is incredibly thankful to his family for supporting him through his decades of running. He mentions how runners often think to themselves, “Why did I sign up for this?” when they’re reaching the hardest point of the race. Steve shared, “That’s another thing about running for charity: you know why you’re out there.” Steve remains involved with ALZ Stars and the running community as a member of the Event Experience Planning Committee. “I’m weaning myself off in a way, because it becomes a lifestyle,” says Steve. He loved the careful attention team ALZ Stars showed their athletes last year, and he hopes to make this year even better. Their homebase at Congress Hote—mere steps away from the start and finish line—had “everything we could possibly want before and after the race,” says Steve. Steve even spoke with first-time marathoners and shared advice he gained from his decades of experience. For Steve, ALZ Stars felt like “a real team.” This year, Steve will shape the race weekend experience for future athletes and encourage them as they join the fight against Alzheimer’s and dementia. He’ll guarantee they have an unforgettable race weekend, and who knows? Perhaps Steve will dust off his shoes and tackle marathon number 31. To learn more about the 2022 Bank of America Chicago Marathon ALZ Stars team or Planning Committee, contact Tracy Collings at tjcollings@alz.org or 847.915.6025. For families struggling to communicate about their loved one’s signs of dementia, attend the virtual Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning on Wednesday, February 16, or Effective Communication Strategies and Author Valene Campbell online on Wednesday, February 23.

“I’m no scientist or doctor, but I can take my passion in music and use it to hopefully make a positive impact,” shares Chicago musician Bryan Adamick. With his band the Struggs, Bryan is fighting Alzheimer’s disease by raising awareness and funds on the road. Alzheimer’s has always been a factor in Bryan’s life. “My maternal grandfather suffered from Alzheimers in the late 80’s and early 90’s when I was in grade school,” says Bryan. “We lost my wife’s paternal grandmother to Alzheimer’s in 2013.” About 10 years ago, Bryan’s mother was diagnosed with early onset Alzheimer’s disease . She is now in an assisted living facility as she faces the advanced stages of the disease. “Alzheimer’s disease takes smart, talented, proud people and turns them into a shell of themselves,” confides Bryan. “While all illness is difficult, Alzheimer’s really puts another level of mental and emotional strain on loved ones, because it feels as though the person you knew and loved for so many years is already lost, and yet, more than ever, they need a great deal of love, care, and extra attention. ” Bryan and his family have found help through the Alzheimer’s Association. Both Bryan and his father regularly attend an Association-led support group . Support groups educate and inform participants about dementia and help attendees develop methods and skills to solve problems. “When my grandfather was suffering from Alzheimer’s…my parents told me that by the time they were older, there would probably be a cure for Alzheimers,” shares Bryan. “Fast forward 30 years and there still is no cure .” For Bryan, Alzheimer’s disease factors in his past, his present and possibly his future. “I’m now married with my own children (7 and 5 years old)…I recognize that there is still no fix in place, and with both my wife and my family prone to this disease, it dawned on me a few years ago that it’s about time I start taking action and doing my part. ” Bryan joined the fight to end Alzheimer’s through his musical talents. He is a founding member of Chicago-based band the Struggs . Bryan is a prolific songwriter for the group. He also provides vocals, bass and acoustic guitar at live shows and on their records. The Struggs took their music around the region last year through a Summer Tour of Midwest Garages. Many venues were closed due to the pandemic, so they played their blend of rock and alternative country in open garages. Bryan shared his connection to Alzheimer’s disease at every stop and collected donations . With more than 6 million Americans living with Alzheimer’s disease, the band met many individuals who had similar stories. Many fans were inspired to give. In October, the Struggs lent their energetic sound to the Chicago Walk to End Alzheimer’s. Their music was an up-beat backdrop to the day’s activities. Bryan even got his whole family involved. “My favorite part of the Walk this year was seeing my kids starting to understand a little more of what Grandma is going through,” Bryan says. “They learned about the Promise Flowers and what the colors represented and held them up in honor of their Grandma and Great Grandma.” Are you interested in using a talent or existing hobby to fight the darkness of Alzheimer’s disease? Start a fundraiser with The Longest Day .  The Struggs’ newest record Common Sense & Accidents comes out Friday, January 7. It will be available digitally on Spotify, Apple Music, Amazon and most major platforms. From www.thestruggsmusic.com : Based in Chicago, the Struggs formed from numerous different bands and musical influences to create their own brand of rock/pop/alt country weaving catchy choruses and harmonies with soaring guitar riffs and solos. Established in 2015, they have played a variety of clubs and festivals, most recently raising money for the Alzheimer’s Association on a Summer Tour of Midwest Garages while clubs were closed. In 2022, the band will release its 3rd LP entitled Common Sense & Accidents.

A large-scale study aims to discover whether lifestyle changes including an increase in physical activity, socialization, cognitive training and healthy diet can prevent dementia. There has been no drug proven to protect brain health, and researchers are excited about the possibility of finding a different preventative option for those at risk for dementia. The trial is called the U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk ( U.S. POINTER ).  It aims to enroll 2,000 people and will take place over two years in five major locations throughout the U.S., including Chicagoland.  The results of a similar study conducted in Finland in 2014 showed that lifestyle changes could make a big impact on brain health. One of the co-Principal Investigators of the U.S. POINTER study, Dr. Christy Tangney, professor with the Departments of Clinical Nutrition and Preventive Medicine with Rush University Medical Center, states that the Finland study was a “trial where diet, exercise, social engagement, and health monitoring all appeared to protect brain health.” That’s great news for those who have been searching for a way to reduce the risk or prevent Alzheimer’s disease and dementia. Investigators are hoping to build on those positive results in the similar U.S. POINTER study. Researchers are enrolling men and women, including up to 30% individuals of color, so that the participants represent the American population.  “We want to make sure that in the end, the results apply to everyone,” states Dr. Darren Gitelman , Director of Cognitive Disorders at Advocate Medical Group and Senior Medical Director with Advocate Medical Center.  Dr. Gitelman is also a co-Principal Investigator for the U.S. POINTER study. He states that he is excited about the idea of improving people’s health while preventing or reducing the risk of Alzheimer’s disease and dementia through lifestyle changes. Benefits of participating in the study include: Professional guidance on eating healthy and increasing physical activity. Tools and connections to continue lifestyle changes even after the study has ended. Benefiting future generations on how to maintain brain health. It is known that lifestyle changes improve cardiovascular and physical health. The big question this trial attempts to answer is – can they also improve brain health? Researchers are optimistic that this study may do what medications have not been able to do so far, which is offer hope for the prevention of Alzheimer’s disease and dementia. In the Chicagoland area, the Alzheimer’s Association Illinois Chapter is partnering with Rush Medical Center and Advocate Health Care to facilitate this new trial.  Study groups that will start in the next few months in Chicagoland include Lake Zurich/Barrington, Naperville/Aurora, and Chicago/West Pullman.  Criteria to qualify for the study include: Between the ages of 60-79. Interested in changing lifestyle habits like activity level and diet. Risk factors such as high blood pressure, high cholesterol, diabetes or family history of dementia. Live in the geographic areas where the study will take place. If you meet the criteria above, you may be able to participate and contribute to our understanding of how to prevent dementia.  To learn more and be contacted for a screening, please visit: Rush.edu/pointer or https://www.advocatehealth.com/health-services/advocate-memory-center/research-trials/ Contributor: Ellen Grover, Alzheimer’s Association Volunteer

For More Information Contact: Jen Belkov Vice President, Public Policy jbelkov@alz.org ALZHEIMER’S ASSOCIATION ILLINOIS CHAPTER RECOGNIZES REP. KATHLEEN WILLIS AS LEGISLATOR OF THE YEAR CHICAGO (Monday, December 13, 2021) — The Alzheimer’s Association Illinois Chapter is excited to name State Representative Kathleen Willis as 2021 Legislator of the Year. This designation is in recognition of Willis’s support of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research. During the 2021 legislative session, Representative Willis served as chief House sponsor of Senate Bill 677, Alzheimer’s Association-backed legislation to create the nation’s strongest dementia-specific education mandate for healthcare providers. Thanks to Rep. Willis’s leadership, the bill passed the House unanimously and was signed into law by Governor Pritzker in August. “Alzheimer’s disease impacts so many people in my district and across Illinois,” said Willis. “I’m proud that Illinois is now leading the nation in our efforts to ensure people living with a dementia receive a diagnosis, and look forward to continuing to collaborate with the Alzheimer’s Association to make Illinois a dementia-capable state.” The Alzheimer’s Association is excited to continue our critical and effective partnership with Representative Willis and sincerely appreciates all the work she has done on behalf of the 230,000 Illinois residents living with Alzheimer’s disease or another dementia and their nearly 400,000 caregivers. L to R, David Olsen, Alzheimer’s Association, Rep. Kathleen Willis, Kate Bobbit, Alzheimer’s Association. ALZHEIMER’S ASSOCIATION ILLINOIS CHAPTER RECOGNIZES REP. MARIE NEWMAN AS LEGISLATOR OF THE YEAR CHICAGO (Thursday, December 16, 2021) — The Alzheimer’s Association Illinois Chapter is excited to name Congresswoman Marie Newman as 2021 Legislator of the Year. This designation is in recognition of Newman’s support of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research. As a newly appointed Member of Congress, Newman instantly became a leader on the Alzheimer’s Association’s policy initiatives. She was the first member of the Illinois delegation to cosponsor our three current policy priorities: the Comprehensive Care for Alzheimer’s Act (H.R. 2517), the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act (H.R. 3085), and the Alzheimer’s Caregiver Support Act (H.R. 1474). All three initiatives are aimed to strengthen the delivery of care and support for those living with and caring for someone with dementia. “Alzheimer’s disease touches far too many families across Illinois and our entire country. I’m grateful for organizations like the Alzheimer’s Association, which do pivotal work to conduct research and advocate for individuals living with this terrible and heartbreaking disease,” said Congresswoman Marie Newman. “I know personally the pain of seeing a loved one battle Alzheimer’s disease, and that’s why I am deeply honored to be named Legislator of the Year by the Alzheimer’s Association Illinois Chapter. I will continue to advocate in Congress for individuals living with Alzheimer’s and those who care for them. I am thankful that as I do so, I have a partner in the Alzheimer’s Association.” We look forward to the continuation of this critical and effective partnership and appreciate all the work Representative Newman has done on behalf of the 230,000 Illinois residents living with Alzheimer’s disease or another dementia, and the nearly 600,000 Illinoisans who care for them. For more information, please visit www.alzimpact.org. L to R, Kate Bobbit, Alzheimer’s Association, Rep. Marie Newman, Brittany Altemus, Alzheimer’s Association. About the Alzheimer’s Association Illinois Chapter: The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s research, care and support. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Since 1980, the Illinois Chapter has provided reliable information and care consultation; created supportive services for families; increased funding for dementia research; and influenced public policy changes.

Brandy and her mother. For Batavia resident Brandy Fernow, “everything changed” for her and her family once they received her mother’s Alzheimer’s disease diagnosis. Despite meeting with several physicians, Brandy noted that there was a huge learning curve that she felt wholly unprepared for. Brandy had just become a mother herself when her mom was diagnosed, and felt that her mother was slipping away right as she needed her most. Her father took an early retirement to help care for Brandy’s mother as her disease began to progress. Brandy and her family turned to the Alzheimer’s Association and found comfort and support. Brandy and her mother surrounded by her grandchildren. They attended educational webinars about dementia-related behaviors and utilized the Safe Return program. By arming herself with information about her mother’s disease, Brandy felt more prepared to support her dad as he entered into his new role as a caregiver and to support herself as she was raising her own family. What Brandy wants others to know is that Alzheimer’s is a progressive disease and is fatal. “I had no idea how people actually die from it,” Brandy shared, and she added that the disease involves so much more than forgetfulness and memory changes. She felt particularly ill-equipped to handle her mother’s personality changes and difficulty with speaking and eating that would emerge. These challenges would ultimately result in the family’s difficult decision to move her mother into a memory care nursing home for additional care. Brandy participated in the Walk to End Alzheimer’s with family, friends and even her mom before her passing. She feels strongly that more advocacy about the disease is needed. She encourages others in her position to “treasure every day,” because Alzheimer’s disease is “the longest goodbye.” Now, Brandy finds meaning by volunteering with the hospice organization that cared for her own mother at the end of her life. She visits patients living with Alzheimer’s disease each week to provide the social and emotional connection that she remembers her own mother enjoying. Brandy and her family at Walk to End Alzheimer’s. Since COVID-19 and the onset of new visitor restrictions at several nursing homes, Brandy still finds a way to connect with those living with Alzheimer’s—she and her kids write letters each week to patients living in local nursing homes. Though Brandy’s mother is no longer with her, she has made it her mission to continue to provide the support and connection that people living with Alzheimer’s disease need most. Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

“A grandmother is something special. Sometimes we don’t realize that until they are gone,” shares longtime Alzheimer’s Association supporter Kari-Ann Ryan. Her grandmother “Nani” lived with Alzheimer’s disease for almost fifteen years until she passed away in 2016. Kari-Ann has been fighting against the disease ever since.  “My grandmother was all about her family,” says Kari-Ann. “A normal Saturday for me as a child would include spending the day with my grandmother either cleaning her house with her, or a full day of shopping, lunch and more shopping. “Nani was a beautiful, unselfish, caring, loving, individual who put many things above herself…We all came first in her eyes.”  Kari-Ann helped care for Nani during her fifteen-year battle with Alzheimer’s disease. Kari-Ann says she “mourned my grandmother’s death years ago” as she progressed into the later stages of the disease. “I tried to be strong every step of the way because all I could hear was Nani telling me, ‘Please stop crying Kari-Ann, it will all be ok. It is going to be ok.’ “So I ask, how does someone with so much to give deserve to be stripped of herself, her memories, her personality, her love?”  This is where Kari-Ann’s record-breaking Walk to End Alzheimer’s story begins.  She started team Lost Souls in 2009 in an effort to control an otherwise uncontrollable situation. Kari-Ann first walked in the Naperville Walk to End Alzheimer’s, and increased her involvement to become the Chair of the Northwest Suburban Walk for many years. Beyond her personal volunteerism, fundraising and efforts to raise awareness, she captains team Lost Souls —the second highest fundraising team in the state! Over the past 7 years, they have raised almost $250,000 for Alzheimer’s care, support and research. “We have nothing if we do not have our memories and experiences,” Kari-Ann shares. “I fight so no one else has to go through what I went through as a granddaughter. I fundraise so no other daughter or son has to watch their mother or father forget who they are and the things they have experienced together. I share my story so people know they are not alone.” Kari-Ann and Team Lost Souls host events throughout the year to raise money and awareness. Their efforts include hosting baseball games, restaurant fundraisers, t-shirt sales, virtual bourbon tastings, raffles and motorcycle runs.  Most recently, Kari-Ann partnered with Studio 19 in Schaumburg to promote a purple hair extension fundraiser in honor of National Alzheimer’s Disease Awareness Month . Half of all purple hair extension sales go towards Kari-Ann’s Walk to End Alzheimer’s fundraising.  Whether it’s partnering with local businesses, recruiting family and friends or leading a committee of passionate volunteers, Kari-Ann is an invaluable champion in the fight to end Alzheimer’s. As Kari-Ann says, “Together a cure is in sight.” Support team Lost Souls and learn more about the Alzheimer’s Association’s vision of a world without Alzheimer’s and all other dementia.

“Well, I’m doing it again. I am running the Chicago Marathon,” shared ALZ Star athlete John Stalker Henderson, who goes by Stalker. He ran his first Bank of America Chicago Marathon in 2000, with his wife and infant daughter—now a graduate of Northwestern University—waiting for him at the finish line. After two decades, Stalker registered for the 2020 Bank of America Chicago Marathon with team ALZ Stars. The 2020 race was cancelled due to COVID-19, but Stalker chose to run 26.2 miles in his home city of Denver, Colorado. (As he jokingly puts it, he got “first place in the Chicago Marathon: Denver Edition.”) Finally, after 21 years and one postponement, Stalker returned to the Windy City to cross the finish line in Grant Park. Stalker was one of 150 ALZ Stars athletes in the Bank of America Chicago Marathon on Sunday, October 10. The team included runners from 33 states and 4 countries, covering a total of 5,004 miles on race day. “Alzheimer’s is not going away just because COVID-19 is with us,” he shared. “So that too had me wanting to continue to run.” He joined ALZ Stars in honor of his mother, who he lost to Alzheimer’s disease. “My mother was diagnosed with what were clear issues of dementia, something that was very close to me given work that I do with folks who are older and sometimes suffer with dementia.” “When I did run when she was around she found it to be kind of absurd,” Stalker recounts with a chuckle. “Even while she was battling dementia [she] was very full of good humor and funny.” Years ago, Stalker ran a race and came in second place behind a high school student. “I got a little second prize…and she looked at me and said, ‘Well, why didn’t you win?’” laughs Stalker. “Last year, I was genuinely buoyed by the financial and emotional support I received from so many people across all parts of my life,” shared Stalker. Many of his donors knew his mother personally, or supported his fundraising because of their own personal connection to Alzheimer’s disease. “When my legs got heavy and the miles got a little longer, I reminded myself of [their] words of encouragement,” shared Stalker. “I happen to be a runner who doesn’t like to run with earbuds in, so when I’m out doing my training runs it’s just me and the sound of my breath and the thoughts in my head. And those thoughts are frequently ones that focus upon the people who have rallied to the cause and provided support to the Alzheimer’s Association and support for me to run the race.” Stalker is the top fundraiser on the 2021 ALZ Stars team, raising $14,173 for the Alzheimer’s Association to enhance care, support programs and research to ultimately to find a cure. “I happen to have friends who are scientists who have benefited from the work that the Alzheimer’s Association has done in support of their scientific research,” Stalker shared. “The money is important…so I’ve done the math in my head and worked it out: how much every stride is. And that helps when the body starts breaking down a little bit for the longer runs.” Our ALZ Stars make a huge impact in the fight to end Alzheimer’s, and Stalker leads the pack with his fundraising. So while his mom couldn’t be there at the marathon finish line, we’re certain she would be proud of Stalker’s first place fundraiser status achieved in her honor. Interested in running the 2022 Bank of America Chicago Marathon with team ALZ Stars? Register at http://act.alz.org/ALZStars2022.

Mary Fus is a fixture of the Chicago Walk to End Alzheimer’s. She is a repeat Elite Grand Champion—a distinction that comes with raising over $2,500 for Alzheimer’s care, support, and research—and Chair of the Mission Committee. She is the proud captain of team Pou-Pou. As of Thursday, October 14, the team has raised over $35,000 in 2021 alone. Mary and her mother. “As a caregiver for my mother with Alzheimer’s disease, it takes more patience than you can imagine; but it is also an honor to give back to her and care for her when she needs it the most,” says Mary. Every dollar raised through Walk to End Alzheimer’s funds research and support services for families around Illinois. Mary’s family is one such recipient. “This will be my 9th year walking in honor of my mom,” she says. “What drives me to continue on this journey is experiencing first-hand as a caregiver, how this disease continues to take away my mom, leaving a shell of who she once was. Our roles are reversed now, I take care of her like she took care of me as a child. I still hold on to those memories and was blessed to have a great role model in her.” Team Pou-Pou in 2013. After years of witnessing her mother’s decline, Mary felt compelled to step up and do something to fight against the disease. “Nine years ago in 2013, I hastily formed my team and it’s called Pou-Pou and that’s in honor of my mother…known as Pou-Pou Yung to her grandkids and many others.” Mary with her mother and sisters at the 2021 Walk. “Our team consists of family and friends who walk not only for her but for the many other relatives and friends that are currently suffering from Alzheimer’s disease and other forms of dementia, as well as in memory of all of our loved ones that have already lost the fight to this thief of a disease.” Mary and her family attended the in-person Walk to End Alzheimer’s on Saturday, October 9 at Soldier Field in Chicago, Illinois. For Mary, participating is her “way of doing something to honor my mother…and to help put an end to this progressive disease, so that others don’t have to experience the loss of a loved one while they are still living.” Mary and her mother. The Alzheimer’s Association is incredibly lucky to have a champion like Mary in our midst, and all the other supporters who strengthen the fight to end Alzheimer’s. Beyond chairing the Mission Committee and being one of our top fundraisers, Mary has volunteered in the Alzheimer’s Association office, advocated policy makers in Springfield, been featured in the Reason to Hope program video and launched the “Light the City Purple” initiative, getting major downtown buildings to light up purple to #ENDALZ. Mary was also instrumental in bringing together a partnership between the Alzheimer’s Association and the Chinese American Service League. A selection of Champions Club incentives. Mary recently joined us on Facebook Live to share a few easy ways to reach the Champion Club. She continues to motivate her team Pou-Pou to raise funds for the Alzheimer’s Association. All Illinois Walk to End Alzheimer’s participants will be eligible for incentives for all donations raised through Wednesday, December 1. Find the full list of incredible incentives here. Team Pou-Pou at Soldier Field in 2019 (13 Champions shown here!) Learn more about Mary’s team here, and check your fundraising status at alz.org.

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

Michele Rust was a generous donor and Memory Rock Chicago committee member who passed away from Alzheimer’s disease on August 2, 2021. Her niece, Robin Eggert Elm, spoke with the Alzheimer’s Association about Michele’s commitment to fighting the disease, and why the cause was so important to their family. Sheila , Rose, and Michele. How has Alzheimer’s disease impacted your life? Michele’s mother and my grandmother, Rose Gold, had dementia. She was born April 4, 1912, on the West Side of Chicago. She married my grandfather, Ralph “Mickey” Gold. In addition to being life partners, they were also business partners. Mickey’s Monograms was the largest monogramming and embroidery factory in Chicago at that time. They made emblems for schools across the country and embroidered the Harlem Globetrotters uniforms. Her daughters, Sheila (my mom) and Michele were “her girls.”  She was diagnosed with dementia in the mid-1990’s and passed away on December 29, 2001. Michele and my mom were her caregivers. When I chaired the Minnesota/Dakotas’ 1998 Alzheimer Gala, my grandmother was an honoree. Michele became involved with the Alzheimer’s Association Illinois Chapter in 2018 after seeing her mother’s journey with the disease. She was thrilled to get involved. Her passion was “making magic.” She went through significant personal challenges when she was in her 20’s and never forgot the people who believed in her and helped her. She committed her life to helping others; it fed her soul. She would often speak to me about her service on the Memory Rock Chicago planning committee. Since I had been on both the Wisconsin and Minnesota/Dakotas’ Board of Directors, we were able to swap stories about our roles. Michele first got involved with Memory Rock when two friends of hers, who were also involved in Memory Rock, took her out to dinner. They spoke highly of Michele and asked her to get involved. I first became aware of Michele’s memory loss in November 2017. It was a difficult year as my mother, Sheila, and father, Dave, died months apart. Michele had an outstanding primary care doctor who advocated for her and kept me apprised of her situation. Unfortunately, like many older adults, COVID-19 and quarantine isolation escalated her dementia. How has Alzheimer’s disease impacted your life? I believe Michele would share how difficult it was for her to watch her mother, who had always been fiercely independent, gradually lose her cognition and be forced to move away from home and away from friends. Michele and Sheila. Michele would also mention the hidden gifts of the experience, such as getting closer to her sister while they shared the caregiving responsibilities for their mother; seeing her mother positively engaged at her memory care facility; being able to have purposeful visits (such as doing ceramics together); and finding humor (such as when my grandmother had a crush on a young, male dining server). Michele was a fiercely independent woman who ran her own business, chaired major fundraising events, and created her own non-profit. She was in her early 70’s when she struggled with her memory. Having her independence for so long made her resistant to discussing memory loss with her doctors. As her Trustee, she made me promise I would do all I could to honor her top two priorities: 1. Stay with her dog; and 2. Remain in her condo. She had an outstanding care manager who worked with me and tried so many things to keep her at home. At a certain point, unfortunately it just wasn’t feasible. She was eventually moved to a memory care facility where she thrived. She was out of her room all day and engaged with the staff and residents. The Executive Director knew Michele’s story and gave her a “job.” She had dignity, was recognized, valued, loved, stimulated, challenged, and safe. Michele and Rose. How has Alzheimer’s disease impacted your life? As Michele cared for my grandmother, education was key. It was helpful for both Michele and my mom to accept my grandmother’s reality vs. arguing with her about things she said.  I also believe in the importance of caregiver education, having witnessed Michele in her memory care facility. Michele was grateful that she had financial resources, and recognized the significant number of people who didn’t and how this limited their care options. The same applies to having a family member who loved her; I have a background in geriatrics, and she knew I would fiercely advocate for her. Why should others raise funds and awareness for Alzheimer’s disease? Education – That it’s not an “elderly” disease. It impacts all generations. Caregiver support – It really is a 36-hour day. Even with my professional experience, I would often spend 3+ hours a day on Michele’s needs. Engagement – Too many older adults are isolated and don’t feel they have a purpose. This takes a toll on their mental health. COVID-19 exponentially increased these stresses and challenges. What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand? After chairing Alzheimer’s fundraisers for years, I became involved with a non-profit for terminally ill children. Each cause requires a different approach to get people invested. People need to remember that an individual living with Alzheimer’s is someone’s mom, dad, aunt, uncle, or friend. The disease affects everyone.  Likewise, we need to recognize the selflessness of health and long-term care facility staff. We all need them, so we should value them and ensure they receive the training and resources they need to provide the best type of care possible. Michele Rust’s Trust is leading the charge against Alzheimer’s disease and all other dementia by sponsoring Memory Rock Chicago at the Title Sponsor level. Join them in honoring Michele’s legacy by making a donation at MemoryRock21.givesmart.com.

Tim Kanold ran the Chicago Marathon on a dare from his best friend Jerry Cummins. Thirty years later, Tim returns to the Windy City to run the Bank of America Chicago Marathon in Jerry’s memory. Dave, Anna, Tim, and Corinne in Tim’s backyard in California. Jerry was diagnosed with Alzheimer’s disease in 2010. On a long walk with Tim in Mission Bay, CA, Jerry shared concerns about memory loss. Tim said, “Our usual lively interaction and banter with one another quickly dissipated once Jerry announced to me, in a matter-of-fact tone, ‘I am having trouble remembering things.’ We walked until dark that day. “It was the beginning of a six-year Alzheimer’s journey with Jerry that began slowly as he gradually drifted from knowing who I was, and ended with emotionless moments together, that left me in desperate tears, hoping he could somehow feel and know my deep love for him.” Their friendship spanned decades, with countless moments of laughter, friendship, and travel. “No matter where we would travel,” said Tim, “we would find a place to walk and talk and to have our deepest conversations. We shared that rare friendship of understood joy and pain, all of the best and the worst that comes from the challenge of living your best life on as many days as possible—every single season.” Early in 2021, Tim decided to honor one of the most significant friendships of his life by running 26.2 miles. “It is a long run for me and my body at this stage of my life. The training is hard, and has had its ebbs and flows, but I love that this run can support research that just may help the future Jerry’s of this world.” Tim gathered friends and family to join him. “Our youngest daughter Anna leads our ‘Run 4 Jerry’ team, along with two wonderful Lodi friends, Dave Phillips and Corinne Howe. And I am so grateful for our merry band of runners.” ALZ Stars athletes commit to raising funds for Alzheimer’s care, support, and research. They receive entry to the Bank of America Chicago Marathon, coaching, branded gear, and more. Tim asked friends, neighbors, and professional connections to support his fundraising effort. “It has been both humbling and rewarding. Most of them have donated because of their love for my colleague…Jerry Cummins. Some of them donated out of respect for me, and some out of respect for the ALZ disease and their own experience of suffering with a family member.” Tim pushed through health setbacks in his summer training schedule and is counting down the days until Chicago. “As to my training, it honestly has had so many challenges unlike anything I have experienced before…But this 2021 year has been filled with challenges as I stretch my body out for the full marathon.” Tim hits the startline in Chicago on Sunday, October 10, in honor of his closest friend. “I know too, that my story with Jerry is not unique,” says Tim. Tim, Anna, Dave, and Corinne will cover over a hundred miles collectively, with every stride moving us closer towards a world without Alzheimer’s and all other dementia. Donate to team “Run 4 Jerry” or learn more about ALZ Stars. Registration for the 2022 Bank of America Chicago Marathon is expected to open mid-October 2021. Email tjcollings @ alz.org to reserve your spot on the 2022 ALZ Stars team.

“I have lost my uncle, my grandfather and my mother-in-law to the disease,” says Katie Thomson. “At some point, Alzheimers will touch everyone in some way or another. We all have a stake in eradicating it.” Katie participated in the Fox Valley Walk to End Alzheimer’s on Saturday, September 18 to move us closer towards a future without Alzheimer’s disease. She has participated in the event for 5 years. Katie currently sits on the Team Retention committee for the Fox Valley Walk to bring more volunteers into the fight to end the disease.  The Alzheimer’s Association is moving forward with plans to host all Walk events in person with the health and safety of participants, volunteers and staff remaining the top priorities. We are implementing safety protocols at all events including physical distancing, contactless registration and hand sanitizing stations. A Walk From Home option is also available, including  a virtual reality experience, for those who prefer to walk in their own neighborhoods.  Katie wants to remind anyone who hasn’t experienced Alzheimer’s or dementia firsthand that “the toll it takes on the patient, caregivers, and  loved ones is devastating in ways hard to conceptualize.” Yet for Katie, Walk represents a future where no family has to face the disease.  “It’s the journey toward the end of this disease…We need all the help we can get!” Join Katie for Walk to End Alzheimer’s by registering at alz.org/walk , or download the Walk Mobile App to start planning your Walk From Home experience.