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“It means a lot to be able to give back,” says Trista Waters. This is her first year participating in the Peoria Metro Walk to End Alzheimer’s on Saturday, October 2. Trista’s mother was diagnosed with Lewy Body Dementia two and a half years ago. “They told her at that time she had been living with dementia for four years already. My mother is 68 and lives in Alaska, and I may never be able to have a conversation with her again over the phone. I know one thing I can do is try and help fight this disease…I feel in life we can’t control everything that happens but we can control how we deal with it.” Trista is determined to raise funds and awareness for Alzheimer’s disease. “We have to fight this,” she says. “More and more people are losing their lives to this disease and we need all the funding we can get to help families get the resources they need. “It’s heartbreaking watching your loved ones deteriorate. Dementia takes everything from you, they don’t know who and where they are and they forget their loved ones. You pretty much are just constantly mourning the loss of your loved one that is still here.” Trista has felt helpless living so far away from her mother. Yet participating in the Walk to End Alzheimer’s gives her purpose. “This is the only thing I know I can do. I just know with me raising as much money as I can, I will help end Alzheimer’s and other dementia…we need a cure!” Walk with Trista towards a future without this disease at one of our in-person Walk to End Alzheimer’s events, or Walk From Home with the new and improved Walk Mobile App .

For Christine Read, the Walk to End Alzheimer’s gives “hope that one day no one else I love and care about will have to struggle with this awful disease.” This is Christine’s sixth year participating in the Lake County Walk to End Alzheimer’s . Christine walks on Saturday, October 2 in honor of her grandmother, who lived with Alzheimer’s disease. “I lost my favorite person on this earth to it. Mourning the loss of someone while they are still living and breathing in front of you…It’s the most heartbreaking way to see someone live day in and day out.” Christine reminds everyone that there is no cure for the disease and no way to prevent the inevitable after diagnosis. “The most important people in your life could one day look at you like you are a complete stranger and not want to be around you, trust you, etc. It can also be frustrating at times if you are a caretaker. No amount of love, care, or compassion will make them remember anything you want them to.” Christine offers two tips for connecting with your loved one as they face the disease. If your loved one has a first language different from your own, Chrstine suggests learning it. “Eventually, they resort to that language and then it will become extremely difficult to communicate with them.” Secondly, Christine stresses the value of music to lift your loved one’s mood. “Music that they love will always trigger a happy place,” she shared. “They will even remember the lyrics. It’s heartwarming and gut wrenching at the same time. You’ll want to know why they can remember the words to a song, but not remember who you are to them.” Having experienced the difficulty of losing her grandmother to Alzheimer’s disease, Christine encourages everyone to join her in pursuit of a cure . She says, “even $1 every month or year will go a long way.” Join Christine at Walk to End Alzheimer’s this fall. Register at alzheimers-illinois.org/walk to raise valuable funds and awareness for Alzheimer’s care, support, and research.

Shannon Elder began participating in the Decatur Walk to End Alzheimer’s two years ago. Her father was diagnosed with Alzheimer’s disease in 2016. Since his passing in 2019, Shannon began to reflect upon what her experience with her father and his illness was like. Shannon was her father’s primary caregiver throughout his illness. Overall, Shannon felt that she did not know enough about dementia and did not feel that she had access to enough education or resources about the topic. That is, until she found her way to the Alzheimer’s Association. Shannon took advantage of Alzheimer’s Association Support Groups for adult caregivers of parents living with dementia, as well as various educational programs about caregiving and Knowing the 10 Warning Signs of the disease. “[Caregiving] seems like something you can do on your own, or that you won’t need much support or help, but I was wrong,” Shannon shared. She added that throughout her experience with her father, she was most struck by the toll that caregiving took on her own health, family and relationships. Shannon got involved with several legislative efforts around caregiving and dementia in an effort to raise awareness. She has been writing e-mails to her local senators, sharing her story and informing them of the impact that dementia has had on her and her family. She believes that these personal stories shed light on how dementia impacts more than just the person with the illness–how it has a “ripple effect,” as she puts it. “This is a disease that it not hard just on the person it affects, it impacts everybody,” Shannon says. For this reason, Shannon wants her senators to lobby for increased research efforts into dementia and finding a cure. She also believes there needs to be more access to dementia education and dementia care so that other families are able to understand what caregiving is and how to make the best decision for their families. After Shannon’s father passed, two other family members were diagnosed with Alzheimer’s disease. She acted as caregivers for them, as well. Her Walk to End Alzheimer’s team is the “Alzheimer’s Warriors,” named to honor the members of her family who have been lost to this disease. “They were the warriors,” Shannon added. “This walk is for them.” Register for your local Walk to End Alzheimer’s at alzheimers-illinois.org/walk. Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

“Stay strong, you are not alone, and we will continue to fight for those who forget how to,” said Airen DeCarli. Airen is participating in the Lake County Walk to End Alzheimer’s on Saturday, October 2 in honor of her mother. For Airen, the Alzheimer’s Association signature fundraising event gives the opportunity to “walk closer to having a white flower, a survivor of this terrible disease. To get funding to run the tests we need so people no longer suffer and lose their memories. They worked so hard to make them.” Christmas Eve 2020 through the glass at Airen’s mother’s care facility. Airen’s mother was diagnosed with Stage 3 Dementia four years ago. “Due to the past year with the COVID-19 pandemic and her facility on lockdown for 13 and a half months, she has progressed to stage 6,” shared Airen. “There was minimal interaction during this time not only with her loved ones but also with facility members. Zoom calls depending on the day were usually confusing for her…Window visits were easier once allowed but my mom didn’t understand that she could see me and hear me through the headset, but couldn’t touch me because of the glass between us. Early November 2020. “It didn’t stop us though. In the cold months, I would wear layers and bring blankets and gloves and a hat while I showed her books with animal pictures. In July of 2020, I received a call saying my mom had tested positive for COVID-19, she wasn’t eating or drinking and they were taking her to the hospital. There were no Zoom calls at the hospital, only phone calls, to which mom didn’t understand anymore. She was scared and didn’t trust anyone. “My mom pushed through…Even through the tough times, we made it work.” Airen is grateful to now have easier access to her mother. “Visitations are in person now minus a few lockdowns every now and then for COVID-19 cases that arise. We go for walks around the pond at the facility complex, blow bubbles with bubble guns and she eats snacks that I know she loves. Sometimes a clarity moment pops through and she starts singing parts of a song that’s playing on my phone.” Airen and her mom on the 4th of July, 2021. Airen’s advice to other caregivers is to “be patient and know it’s okay that some days are better than others.” She wants those who haven’t faced Alzheimer’s or dementia to understand that “the caregivers are struggling just as badly as the ones with the disease. It doesn’t just affect the person with it, it affects all their loved ones, too.” “We take one day at a time; some are better than others. Sometimes I cry after I leave her, sometimes I’m happy—it all depends on how the visits are. Each day is a roller coaster.” Airen remains hopeful for a future without Alzheimer’s and dementia. “I will be strong and I will fight for her, for my family, and for all others going through it. I’m hoping together we can get that white flower.” Join Airen in seeking an end to Alzheiemer’s and all other dementia by participating in your local Walk to End Alzheimer’s event. Register at alzheimers-illinois.org/walk. At the 2020 Walk Promise Garden.

Melody Mulvaney is participating in the Mattoon/Charleston Walk to End Alzheimer’s on Saturday, September 25 in honor of her mother. When asked what the event means to her, she replied: “It means potentially putting an end to Alzheimer’s by raising funds for a cure. It’s also a great feeling coming together with so many people that are like family. Everyone has a different story but are all there for the same reason.” She has been involved with Walk for eight years. Melody encourages others to join her in raising funds and awareness for Alzheimer’s disease. She shared, “It truly is a horrible disease for the person living with it & for their family. They say Alzheimer’s is the long goodbye & I totally agree. You lose a little more of the person every day over time. As an Alzheimer’s daughter it is truly one of the hardest things that I’ve dealt with in my life. It robbed my mom of the things she enjoyed most in life! As a daughter/ caregiver I felt completely helpless because I knew there was nothing I could do to make her better. I know that’s how [other] family members…feel as well.” Melody’s mother lived with Alzheimer’s for about 10 years. Sadly, she passed away from the disease in June 2019. “I know in the beginning,” Melody said, “My mom was forgetting things but she still knew she was forgetting & it was very embarrassing for her. She thought everyone thought she was stupid. All we could do was try to reassure her that no one thought that. Do not argue with someone with dementia, it only makes them feel worse…Always remember, that’s the disease causing this, not your friend or loved one…They are still your friend or your loved one no matter what! We kept Mom at home as long as we could, but eventually, as hard as it was, we had to put her in a nursing home. She was on a regular Alzheimer’s floor & received very good care there. “We were there with our Mom every step of the way. We never let her fight this battle alone….Her fight was our fight too!” Melody and her two sisters visited their mother in her nursing home on a regular basis. They always went for holidays & their mother’s birthday. Melody was able to find support as a caregiver from her family and online community. “Life with Alzheimer’s/dementia is a roller coaster ride, full of ups, downs, sideways & upside downs. If you are a caregiver, please get a support system. This disease is hard on the person that has it but also very hard for the family & the caregiver! Talk to someone,  have a backup so you can take a day away. I joined some Alzheimer’s support groups on Facebook & it helped a lot. As a plus I’ve made a lot of great friends (family really) through these pages. You just have to take it one day at a time & pray for the best!” Join Melody in raising awareness and funds at Walk to End Alzheimer’s this fall. Find your Walk at alzheimers-illinois.org/walk .

On Monday, August 16, two of our policy victories were signed into law by Governor JB Pritzker! Special thanks to the partnership with our very own Lt. Governor Juliana Stratton and bill sponsors for making these successes possible. Thanks to leaders State Senator Ram Villivalam and Representative Kathleen Willis, Senate Bill 677 was signed into law as the first bill in the nation to ensure doctors and other healthcare provides serving adults receive ongoing dementia training. Thanks to sponsors Senator Melinda Bush and State Representative Natalie Manley, House Bill 848 was signed into law to extend the scratch-off lottery ticket to continue raising funds for Alzheimer’s care, support, education and awareness in Illinois. Together, we are making Illinois a dementia capable state! Learn more about Alzheimer’s Advocacy in Illinois.

So far, Brian Gaughan has faced countless challenges, both in his professional life and his personal life. He worked as a police officer for 10 years and then as a firefighter/paramedic for 23 years. He is a father of 8 and a grandfather of 13 (with #14 on the way!). His latest obstacle presented itself in July of 2020 when he was diagnosed with early onset Alzheimer’s disease at the age of 61. He noted that this diagnosis “wasn’t really a shock at all,” as he had been experiencing significant memory problems and forgetfulness. “It’s not like, ‘Where are my keys?’ It’s like, ‘How do I get to work today?’” Rather than dwell on his early onset diagnosis, Brian said that his diagnosis pushed him and his wife, Judy, to “do things that [they] would be putting off” and to start crossing things off of Brian’s bucket list. First thing on the list? A road trip across the Pacific northwest in an RV. Brian noted that his Alzheimer’s diagnosis caused him and Judy to rearrange their priorities and that Brian wanted to prioritize enjoying his life and having fun. In fact, his advice for anyone who has been recently diagnosed with Alzheimer’s disease is to “sit down and figure out what you want to do [in life] and go do it right away.” Through the Alzheimer’s Association, Brian has found a supportive network and a newfound voice of advocacy and change. His devotion to the mission of the Alzheimer’s Association is evident in his immense involvement within the organization. Soon after his initial diagnosis, he regularly attended a regional Young Onset Support Group in which he connected with other people who were dealing with their own diagnoses. Recently, Brian was selected as a member of the Alzheimer’s Association national Early Stage Advisory Group, a role in which he will act as a spokesperson for other people with early onset Alzheimer’s, and participate in various speaking engagements. Previously, Brian provided testimony to an Illinois House of Representatives committee regarding mandated training for physicians. He hopes to do more lobbying in the future for increased education and research pertaining to dementia. There is no doubt that Brian will continue demonstrating immense courage when faced with challenges throughout his dementia journey – just like he has done when faced with adversity throughout his storied career as a first responder. What’s next for Brian? Well, he and Judy are still figuring out where their next RV destination will be, but one thing is for certain – he needs to make it back to Chicago by the end of August to meet grandchild #14!  Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

The Alzheimer’s Association Illinois Chapter is thrilled to announce the new members of our Board of Directors. The incoming cohort is led by Chair Aimee Nolan, Vice President, Associate General Counsel and Chief Intellectual Property Counsel for W.W. Grainger, Inc. Incoming Board Chair Aimee Nolan. Aimee is the Vice President, Associate General Counsel and Chief Intellectual Property Counsel for W.W. Grainger, Inc. She is responsible for providing legal counsel and strategic advice in connection with the company’s technology, digital and eCommerce matters as well as all aspects of Grainger’s Intellectual Property portfolio, including patents, trade secrets, trademarks, copyrights and domain names. Aimee also supports the company’s global product sourcing group, marketing and advertising initiatives, the customer growth strategy and information teams and corporate communications. She is also a leader of Grainger’s enterprise wide efforts on data protection, cyber security, privacy and breach response, and provides legal counsel in connection with its pandemic response efforts. Aimee is passionate about serving the mission of the Alzheimer Association, Illinois Chapter because her mother Betsy died at the age of 62 from early onset Alzheimer’s. Her mother’s primary caregiver was Aimee’s grandmother, who passed 10 days after her mother’s death. Aimee’s grandmother on her father’s side also passed of Alzheimer’s. Aimee served as a member of the Illinois Women and Alzheimer Initiative Task Force and served as chair of Illinois Women Conquer ALZ (IWCA) from 2017-2021. She joined the board of the Alzheimer’s Association, Illinois Chapter on July 1, 2017. Aimee has been an enduring champion of the Alzheimer’s Association, and we look forward to this next chapter in her steadfast leadership. We are also pleased to welcome six new members to our Board of Directors. This dynamic group will apply their skills and expertise to furthering the mission of the Alzheimer’s Association. We thank them for their commitment to our vision of a world without Alzheimer’s and all other dementia. The six new members of the IL Chapter Board of Directors. (Pictured clockwise from top left.) Lisa Butler – Senior Director, CVS Health Marta Cerda – CEO, ASI & NE Healthcare Nick Gialessas – Vice President, Kufman Hall Marilyn Lissner – Executive Director, Cushman & Wakefield Nancy Tyrrell – Associate Director, Translational Activities – Chicago Biomedical Consortium Ray Willis – Retired, most recently served as the Director of Community Planning and Development for the Chicago Office of the United States Department of Housing and Urban Development (HUD)

Sarah and her mother, Milly O’Brien. Sarah O’Brien Boyd will lace up her sneakers and hit the tennis court on Saturday, June 19 to participate in The Longest Day. She will play tennis from sunrise to sunset in Skokie, Illinois, in honor of her mother, Milly O’Brien.  Milly passed away from Alzheimer’s disease in 2016. She was an extremely active person and was passionate about tennis for almost forty years. Sarah will honor her mother’s legacy this weekend by playing the sport she loved. Sarah’s friends and family will join her on the court to keep her busy all day. Sarah is the youngest of seven children and grew up in Northern New Jersey. While her siblings on the East Coast won’t be able to cheer her on in-person, they contributed significantly to her fundraising. They also helped Sarah brainstorm some of Milly’s famous expressions which Sarah used as names for her sign up slots. Sarah shared, “When I came up with the idea of using my Mom’s expressions as time slots for my SignUpGenius, they helped me remember many of them. It was right around Mother’s Day and the 5 year anniversary of my Mom’s passing, so I think it was our way of paying tribute to her.” Her sayings included, “Believe half of what you see and none of what you hear,” and “Only boring people are bored.” Reminiscing about their mother’s songs and sayings made Sarah and her siblings laugh, providing a moment of levity on an otherwise somber anniversary.  Sarah’s husband and children are also supporting her Longest Day activity. Her son Cameron will host his own all-day sporting event: he plans to play golf from sunrise to sunset one day next week. Sarah’s younger sons and husband plan to join her during one of her tennis slots on Saturday and cheer her on from the sidelines throughout the day. Relatives on both sides of their family have passed from Alzheimer’s and dementia, and some are living with it today. “Obviously, there are so many needy causes out there and people tend to get involved when a disease affects them personally,” says Sarah. “So I think the more we can educate people about what happens to Alzheimer’s patients and their families, the more people will want to get involved and raise funds to fight the disease.” Sarah’s fundraising is in full swing: she hasn’t gotten to the tennis court yet, but she already reached the elite Solstice Champion status. She started collecting donations early and raised over $11,000 for Alzheimer’s care, support and research. As Milly would say, “The early bird catches the worm.” Support Sarah’s The Longest Day fundraiser here, and learn more at alz.org/TheLongestDay. The Longest Day is a fundraising event focused around the summer solstice—June 20—that strives to advance the care, support, and research efforts of the Alzheimer’s Association. People from around the world will choose a fundraising activity of their choice to fight against Alzheimer’s.

The Final Roses by Susanne Dotson Join Illinois Women Conquer ALZ on Wednesday, May 26th at 5:00 PM CST for an incredible event with artist Susanne Dotson. Hear Susanne’s personal story of her mother’s journey with dementia as shown through her artwork. Victoria Raymont, the Chair of the Illinois Chapter Board of Directors, will be in conversation with Susanne during the event. Proceeds from select artwork sales will go towards supporting the Alzheimer’s Association. Susanne’s mother, Harriet Keller Wise, was an artist. Susanne grew up with a 48 box of crayons and unlined paper always around the house. She always loved making art, and would later pursue it as a career. Susanne spent ten years working towards an undergraduate BFA degree, worked 40 years in the business sector, and attended Columbus College of Art & Design to earn her MFA after retiring. Her mother loved to critique and engage in art conversation with Susanne. Her mother was proud of Susanne’s path to earn her degrees. Join us to learn about Susanne’s mother’s journey with dementia, and how art provided the perfect medium to share her story. To RSVP for An Intimate Conversation with Artist Susanne Dotson: “Can You Tell Me Who I Am,” click here.

Back in 2003, my grandpa, Ralph, had to have a procedure to remove a tumor from his brain. Shortly after that, he started to forget things such as his address, where he was going, and he would start repeating the same stories. Initially, they thought this was a result of the procedure, but it was quickly diagnosed as the beginning stages of Alzheimer’s. This news shook up our family. When talking more to my family about it, my dad and his brothers spoke about how their grandma, Ralph’s mother, had the same symptoms of the disease. At that time, Alzheimer’s was not as commonly diagnosed, so she was diagnosed with being senile. After a few years, my family chose to move my grandpa into a home not too far from my grandma. Since I was so young when he was diagnosed, a lot of my memories were in that home visiting him. Even at the age of ten, knowing that this is a genetic disease, I knew I wanted to work towards a cure for my family and my future. Growing up, I heard all of the stories about how great my grandpa was. He was well known on the railroad, and even until this day, when I meet someone who works for the railroad, I still get, “Are you related to Ralph Windisch?!” Even though I had always heard about how much of a big shot he was, he was still always just the person who would sneak me all his cucumbers from his salad plate at dinners because he knew they were my favorite. Before he was ever grandpa, he was just a cool kid from St. Paul, Minnesota, who loved his motorcycle club and fell in love with my grandma shortly after she left the convent. They went on to be married for the rest of their lives and have five boys. I am originally from the suburbs of Chicago, but I now live in Los Angeles. During the last Los Angeles Marathon, I went down my street to watch and cheer on the runners. At that moment, I told myself that I would eventually work up the courage to run one myself. During the pandemic, I got into running as a form of therapy and also a reason to get out of the house. I then decided that it was finally time to run that marathon, and I wanted to do it back home. I knew that I wanted to run through a charity team, and there was no question that ALZ Stars was the choice for me. Along with wanting to run for my grandpa’s legacy and the future of my family, I recently had genetic testing done. I found out that I have multiple genetic markers for Alzheimer’s. I am only 28 years old, so I am hopeful that with all of the amazing work and with the research I have access to, things will be better in the future. This disease does not just affect those who have it, but all of their loved ones as well. It is a terrible disease that slowly changes and takes away the people you love most. I encourage everyone to learn about Alzheimer’s disease and spread awareness so we can move forward in finding a cure. Donate to Courtney’s ALZ Stars fundraising page HERE and help her make a difference. To learn more about ALZ Stars and join the team, click HERE .

Story by Jeremy Greenberg My Grandma is one of the smartest, strongest, and most caring people that I know. She has been battling Alzheimer’s disease for years and is now in the later stages of the disease. Growing up, I would frequently tell her that she was a tank because I never saw anything stop her from where she was going. She has always displayed so much strength. When I was young, my grandma showed her strength through daily exercise. She would begin at 3:30 or 4 A.M. with her strength exercises, and then go to the park near her home to power-walk. This daily exercise would take her a couple of hours. When my sisters and I stayed at her house, she would be back well before we even got out of bed. Many years ago, her initial progression with Alzheimer’s started with her being confused about what was going on. Over time, the disease has taken more and more of her abilities. While that has gone on, her ongoing strength fighting Alzheimer’s is remarkable. However, it is still so hard for everyone who knows and loves her. Watching my Grandma fight the disease has shown me that there are many ways to be strong, and there are many ways to be a resource to the people around you. This year, I am running my 9th marathon to honor my Grandma’s ongoing strength. I was drawn to join the ALZ Stars Bank of America Chicago Marathon team again in 2021 because I learned from my Grandma the love of exercise and that life is better in motion. I hope others decide to fight the disease by raising awareness and funds to advance the care, support, and research efforts of the Alzheimer’s Association®. By contributing to fight Alzheimer’s, we are helping more than 5 million people currently going through the disease and 16 million expected by 2050, and the loved ones closest to them. For those who have not experienced Alzheimer’s firsthand, I’d like to ask for empathy towards people you may encounter who are going through the disease. I have learned that empathy can go a long way. It is important to meet people where they are, and remove expectations. I hope more and more people can come together to continue the fight against Alzheimer’s disease. Donate to Jeremy’s ALZ Stars fundraising page HERE and help him make a difference. To learn more about ALZ Stars and join the team, click HERE .