Barrington resident shines light, honors father on winter solstice

“The waters are deep and wide and murky,” shares Barrington resident Justine Gregoire on the challenges of caregiving. Her father was diagnosed with Alzheimer’s disease in 2018 and passed away this spring. Justine faced unique challenges as an Alzheimer’s caregiver. She found valuable support through the Alzheimer’s Association, and today she fights for a cure by fundraising with The Longest Day.

Justine became a caregiver to her father in 2020, two years after his initial diagnosis. She began caregiving fulltime during a global pandemic. “My father and mother moved in with us during the pandemic so we could help care for my dad with my mom,” Justine shares. “It was one of the hardest times in my life.”

After progressing through the disease, Justine’s father passed away on Mother’s Day in 2022. She remained committed to raising awareness for Alzheimer’s disease even after her caregiving responsibilities ended. The Longest Day, a signature event from the Alzheimer’s Association, let her get involved on her own terms.

Named after the day with the most light — the summer solstice — The Longest Day asks participants to use their creativity and passion to join the fight for a cure. Justine and her husband Joel chose to host a golf outing on the summer solstice in 2022. However, her fundraising began months before on the darkest day of the year.

On December 21, 2021, the winter solstice, Justine shared an unfiltered look at a night in the life of a dementia caregiver on her social media pages. “People have no idea how hard the nights are. I thought telling that story on the longest night of the year was appropriate,” Justine shares. “I have never shared anything so personal on social media before.”

Her candor was met with an outpouring of support. Justine expected to raise $500 when she posted her story to LinkedIn and Facebook. She raised over $4,000 in the span of a few days.

“It was amazing,” says Justine. Between her winter solstice fundraiser and her summer golf outing, she raised $12,000 for Alzheimer’s care, support and research. She hopes that her honest story motivates others to join the fight for a cure.

“If you know or love anyone who is or will be 65, then the chance of them getting Alzheimer’s is [high],” Justine says. She’s referring to the fact that 1 in 3 seniors dies with Alzheimer’s or another dementia. “Those are high odds and there are zero effective treatments.

“[The disease is] not just simply forgetting something you said or did or a person’s name,” she shares. “Someone with Alzheimer’s forgets everything about who they are: what they liked to eat, how to sign their name, how to fix things.” As the disease progresses, intensive, around-the-clock care is usually required for a person living with the disease. Late-stage challenges include trouble walking, showering and breathing. “It is devastating to watch, especially knowing there is no hope, no respite,” Justine confides. The burden of caregiving can be emotional, physical, and financial.

“It is not peaceful,” Justine says of the disease. “I don’t want one more person to watch their loved one die like that. And it hurts me to know it’s still happening every day.” 

There is no guidebook for caregiving; but the Alzheimer’s Association provides resources for every step in the journey. Justine found the free, 24/7 Helpline (800.272.3900) particularly useful in choosing the appropriate care options for her dad and tackling the financial challenges of caregiving. “I used the helpline and received the best information and help I received from anyone during the course of the disease,” she says.

Every call to the 24/7 Helpline reaches a master’s-level clinician offering confidential support to people living with dementia, caregivers, families and the public. “You need to speak to someone who knows what they are talking about,” assures Justine.

Individuals looking to fight the darkness of Alzheimer’s disease are invited to register for The Longest Day. While some participants choose to do their fundraiser around the summer solstice, winter is an ideal time to start fundraising. Consider hosting a hot chocolate stand to raise funds for the Alzheimer’s Association; host a sledding competition with a donation entry fee; or share holiday pies in exchange for a donation to your fundraising page.

Register for The Longest Day and raise $200 by December 21, the winter solstice, to earn a free thermos. Get started now: https://alz.org/tld

Athlete honors father, family by running marathon to fight Alzheimer’s

Alzheimer’s runs deep in Alyssa Johanson’s family: her great-aunt and grandmother both passed away from the disease, and her father was diagnosed with early-onset Alzheimer’s nearly four years ago. An athlete her whole life, Alyssa joined the 2022 Bank of America Chicago Marathon ALZ Stars team to raise awareness and funds for a cure. 

Alyssa began long-distance running after college. “I remember watching a friend run a marathon back in 2019 and was so moved by her run that I woke up the next day and signed up for my first marathon,” she says.  

For her second marathon, Alyssa wanted to make her miles matter beyond the personal achievement. She discovered the Alzheimer’s Association charity team, ALZ Stars. 

“Raising money for a cause so close to one’s heart helps to lessen the burden and grind of marathon training,” shares Alyssa. “I signed up to run with the official 2020 ALZ Stars team and unfortunately due to COVID, we couldn’t run in-person in Chicago.” However, the pandemic didn’t stop Alyssa from making a tremendous impact.

“I still chose to run it on my own at home in California after raising over $6,000 for the Alzheimer’s Association,” says Alyssa. Her entire family – including her father – celebrated with her at the finish line.

Currently our highest ALZ Star fundraiser with over $12,900 raised for Alzheimer’s care, support and research, Alyssa is traveling to Chicago to conquer the Bank of America Chicago Marathon. She joins hundreds of ALZ Star athletes who have been impacted by Alzheimer’s and dementia. 

“It’s hard to put into words the amount of gratitude I have towards every individual who has helped me along the way — those who have donated to my fundraisers, trained with me, sent me a motivational text message. Doing something outside of your comfort zone with the support of an entire army of supporters is one of the most rewarding feelings that life has to offer.”

Alyssa’s fundraising has had a huge impact for individuals and caregivers facing Alzheimer’s – a responsibility she is well-acquainted with. “I moved home in August of 2020 to help my mom with caregiving duties, which lasted for about a year and half,” Alyssa shared. Her father’s disease eventually progressed, causing them to place him in a long-term memory care home this past March. 

Grieving a loved one with advancing Alzheimer’s disease doesn’t happen in a straight line. Some days I wake up hopeful, energized by the reminder that life can be so fragile so we must all make the most of it while we’re here, and other days I wake up deeply depressed, missing my father, knowing that while he is still alive, he is no longer the man that he used to be, stuck inside of a body and brain that are failing him.” 

Alyssa’s father won’t be in Grant Park to celebrate Alyssa when she crosses the finish line, but he will be on her mind as she runs. “My dad won’t be there this time around, but I’ll have him, my grandma, and my great aunt in my thoughts along every mile of the race as my motivation!”

Learn more about ALZ Stars and join the 2023 Bank of America Chicago Marathon team at act.alz.org/ALZStars2023

Illinois Welcomes New Board Members

The Alzheimer’s Association Illinois Chapter is thrilled to welcome seven new members of our Board of Directors for fiscal year 2023. Our new board members commit their talents, passion, time and connections to strengthen the fight against Alzheimer’s. We thank them for their commitment to our vision of a world without Alzheimer’s and all other dementia, and we look forward to accomplishing incredible things together in the year ahead.

Scott Burnsmier – Operations Manager, University of Illinois
Hillary DeGroff – Associate Principal, Perkins Eastman
Jeremy Kruidenier – Executive Director and General Counsel, Wine and Spirits Distributors of Illinois
Osvaldo Montelongo – CEO, ConnectCareHero
Carol Shaw Burns, Ph.D. – Corporate Director of Resident Service, Vi Living
James Sherwood – SVP and Counsel, McGuireWoods Consulting and LLP
Ajay Sood, MD, Ph.D. – Assistant Professor, Rush University Medical Center


ALZ Star discovers passion for running, mental health

Washington state athlete Zoe Yoshinari has a goal of running all six Abbott World Marathon Majors – that’s over 157 miles! She will be halfway to accomplishing her dream when she crosses the finish line at the 2022 Bank of America Chicago Marathon. Zoe is running with team ALZ Stars, the Alzheimer’s Association’s charity team, on Sunday, October 9. Having watched her grandmother’s journey with dementia, Zoe is making her miles matter for a cause that is close to her heart.

Zoe joined ALZ Stars in honor of her grandmother, who lived with Multi-infarct dementia. “My grandmother, Barbara Walton, was a wonderful woman. Mother of four, grandmother of five, devoted wife,” shares Zoe. Barbara ran a hotel in the 60s and 70s while balancing family responsibilities. It brought “a multitude of stresses,” according to Zoe. She believes her grandmother’s job stress may have impacted her dementia.

“I never quite understood it at such an early age. Until I was living in New York in my late twenties,” confides Zoe. She experienced the stress and hustle of city life for the first time. The need to care for her own mental health was incredibly important, especially after seeing the toll that stress took on her grandmother. Zoe found solace in long distance running. 

Running was my daily therapy. It made sense that my mental health, just like my physical health, needed to be taken care of as well as maintained.” 

Her personal love of running grew into a desire to raise awareness around mental health. She found that caring for her mental health was just as important as her physical health, and she wanted to share the discovery with others.

“Completing my first marathon in New York in 2007 seemed like a natural evolution,” she shares. But it didn’t just “mark a check” on her bucket list. Instead, it “ignited a passion to complete the Abbott World Marathon Majors. Six Races. Six Stars. One Dream.” 

“Now 11 years on, at the age of nearly 43, I have the courage to continue working toward that dream,” says Zoe. Since completing the London Marathon in 2011, she is “happily married, a mother to two wonderful children and proud to have established a woman owned business.

“Fear had stalled my momentum but now I’ve found the courage to follow my heart, stand up for my dream and I’m ready to conquer another marathon.”

Zoe is excited to use her next marathon to raise funds and awareness for a disease that impacted her family. She says that running on team ALZ Stars gives her next race extra purpose and meaning. 

ALZ Stars athletes sign-on to raise funds and awareness for the Alzheimer’s Association and receive a limited entry to the Bank of America Chicago Marathon. The 2022 team has 298 athletes, and they already raised over $200,000! Zoe has surpassed her personal fundraising goal – but she isn’t stopping. 

At the beginning of the summer, Zoe and a group of running buddies held a fundraiser in San Diego with phenomenal results. They ran 4 miles every 4 hours in 24 hours, and raised support for an important cause. 

Zoe continues to prepare for 26.2 miles in Chicago this fall. She is getting closer to accomplishing her goal of completing all six Abbott World Marathon Majors, all the while moving us towards a world without Alzheimer’s and all other dementia.

Donate to Zoe’s fundraising page as she prepares for the Bank of America Chicago Marathon, and learn more about team ALZ Stars here.

Chicago skyline illuminated purple for Alzheimer’s and Brain Awareness Month

Photo courtesy of Sam Karow

The Chicago skyline was illuminated purple to raise awareness for Alzheimer’s and Brain Awareness Month (June) and The Longest Day. From Monday, June 20 to Friday, June 26, buildings were encouraged to light the signature color of the Alzheimer’s Association and display the slogan “ENDALZ.” The initiative was spearheaded by our Illinois Chapter Concern and Awareness committee in partnership with the Building Owners and Manager Association of Chicago (BOMA). Their Illuminate Chicago Lighting Program was created almost ten years ago to build support for charitable causes. We are grateful for their support as we raise funds and awareness to put an end to Alzheimer’s and all other dementia. 

This year’s participating buildings included the Wrigley Building, Prudential Building and Plaza, United Center, Brittanica Building, Soldier Field, Blue Cross Blue Shield, John Hancock, Willis Tower and Elgin’s 2500 Westfield building. All member buildings had the opportunity to participate and show their support for the fight to end Alzheimer’s.

To learn more about The Longest Day, visit alz.org/TLD
To learn more about Alzheimer’s and Brain Awareness Month, visit alz.org/ABAM

Photo courtesy of Sam Karow