Walking, Running, and Advocating for a Cure

Liz Miro isn’t sitting down for Alzheimer’s – she walks, runs and advocates for an end to the disease. Her maternal grandfather is currently living with dementia, and her father was diagnosed with Alzheimer’s disease in 2014. She teams up with the Alzheimer’s Association in multiple capacities to fight for a world without Alzheimer’s and all other dementia.

Liz is a longtime fundraiser with Walk to End Alzheimer’s, participating in the Chicago and North Shore events. She first participated in 2016, two years after her father was diagnosed with Alzheimer’s disease. The 2022 Walk to End Alzheimer’s – Chicago takes place at Soldier Field on Saturday, October 8. Events are hosted in communities across the state from September to October. 

“It’s a great fundraiser, but also a way to bond with people who have similar experiences,” Liz shares.

Liz wears her purple ALZ Stars singlet and poses next to her black dog.

She even gets her four-legged friend involved: for the past six Walks, Liz has brought her dog to Walk alongside her. 

Her involvement doesn’t stop on Walk day. Liz ran the 2019 Bank of America Chicago Marathon on the Alzheimer’s Association charity team, ALZ Stars, and raised close to $2,000. Her fundraising directly supported families facing Alzheimer’s disease and research efforts in Illinois and beyond. 

Liz has also worked with our Public Policy team on various advocacy initiatives. She traveled to Springfield with other volunteer advocates for Illinois Day of Action, where she urged state legislators to support policy priorities that make Illinois a more dementia capable state.

All of these activities are important to Liz because of her personal experience with Alzheimer’s disease. She shares the reality: “There is NO CURE and really, no effective treatment. 

“It’s so heartbreaking because you lose your loved one twice. Grieving someone who is alive is a very unique experience that most people can’t comprehend.”

Join Liz in fighting for care, support, research, and ultimately: a cure for Alzheimer’s and dementia. Register for your local Walk, run 26.2 miles to #ENDALZ on team ALZ Stars, or learn more about our advocacy work.

Research grant awarded to Dr. Xiaoran Liu

The Alzheimer’s Association has awarded a 2022 Alzheimer’s Association Research Grant to Dr. Xiaoran Liu.  This grant will enable Dr. Liu to continue her innovative research into how people’s diets may affect their cognitive function as they age and how diet may ultimately play a role in people’s risk of developing Alzheimer’s disease and dementia.

When asked how she felt about receiving this grant, Dr. Liu stated, “I am thrilled.  I am delighted to learn that primary prevention through modifiable factors, including diet, is a research priority.

The grant will enable her to continue her research toward a potential preventive treatment for this disease that currently has no cure and few effective treatments. “This is an amazing opportunity to leverage my previous research experience and tackle a devastating disease,” she says.

Dr. Liu is a researcher and assistant professor at Rush University Medical Center in the Department of Internal Medicine at the Rush Institute for Healthy Aging. Her research focus is nutrition epidemiology – she conducts studies to evaluate how diet can affect the health of a population.  She has been working on several studies that specifically examine how diet and lifestyle affect cognitive function.  Recently she has used blood-based nutrient biomarkers as part of her studies in addition to traditional measurements to analyze her findings. 

Two representatives from the Alzheimer's Association Illinois Chapter stand onstage with Dr. Liu as she receives a large white check for her research grant.
Dr. Xiaoran Liu receives a check for her research grant at Reason to Hope. (L-R) Executive Director Delia Jervier, Dr. Liu, Board Chair Aimee Nolan

Her work could help scientists understand if dietary interventions could help in the fight to end Alzheimer’s.  Dr. Liu states that this is what originally drew her to this research focus.  “If successful, a primary prevention treatment could delay the onset, prevent the loss of memories, and preserve independence for a large proportion of the older population,” she says.

Dr. Liu’s work aligns with the goals of the Alzheimer’s Association grant program, which are to promote research to fill in gaps in knowledge and support investigators at every professional level.  The grant she received funds early career scientists and those in underrepresented racial and ethnic groups in Alzheimer’s and dementia research. 

The Alzheimer’s Association has awarded a total of 133 awards to researchers like Dr. Liu, totaling $26.4 million.  There are currently 13 active awards using grant money from the Illinois Chapter to conduct a variety of research related to Alzheimer’s and dementia. 

The Alzheimer’s Association funds research that provides essential knowledge to lead the fight against Alzheimer’s and dementia.  In fact, the Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s disease research in the world. Their research grants have funded some of the most important research breakthroughs including Alzheimer’s drug studies and the ability to visualize brain plaques, which are protein changes in the brain related to Alzheimer’s disease.

As research continues to evolve, the hope is that one day there will be a treatment or cure for Alzheimer’s disease and dementia.  Until then, the Alzheimer’s Association will continue to provide resources to those working toward that goal.

Contributor: Ellen Grover, Alzheimer’s Association Volunteer

Monticello man honors hero by fundraising, running

Written by Scott Burnsmier

I must admit writing this was one of the most difficult and painful experiences I have had since mom passed away in April of 2018 from Lewy Body Dementia. As I sit here and reflect on the disease and the experiences it gave to our family over the last ten years of her life, it reminded me that Alzheimer’s is indiscriminate to who you are and the background you bring.  All I could think about was my Mother, Dorothy Key — my hero, a strong-willed person who raised three kids on her own, is in for the fight of her life. I immediately started finding out what I could when we started the journey in 2008. Alzheimer’s: what is it? What will happen to our mother? We took the dreaded journey of getting answers from the Neurologist. He went through tons of tests and explained what was ahead.

A young scott stands outside in the sunshine with his mother, Dorothy.

I immediately thought, “But she is only 62 and why her?” I then went to God and prayed as I said, “I trust you and the plan you have for her.” As the disease progressed, the first few years were somewhat normal. However, year four was met with challenges as mom found a painful lump in her breast and we had her checked. Sure enough, she had stage one breast cancer. We immediately scheduled not only our Neurology appointments, but we also had Oncology and radiation treatments as well. During this difficult time with mom, we were dealt the devastating news that my father-in-law Dean was diagnosed with Alzheimer’s. His journey would last for the next six years until he passed in 2018, just 63 days after mom.

Scott reaches out to comfort his mother as she rests in bed.

I found myself at a crossroads in life as my wife Sandy and I navigated two sick parents. There were stressful moments and quite a few nursing home moves for both. I kept this phrase in my mind as we went on the Alzheimer’s journey: “We could choose to get better or bitter about our circumstances.” I was very grateful to have an incredible support system of my sisters Robin and Barb.

Over the next few years, we joined Walk to End Alzheimer’s – Greater Champaign/Urbana teams coordinated by my other father-in-law. I even celebrated my 50th birthday by running 50 miles in forty-eight hours. Alzheimer’s may have taken my mother, but it hasn’t taken my will and desire to ensure no other family faces the same journey I did. Join Walk and make a difference.  

Children’s Book author encourages honesty for families facing dementia together

Written by Laura Smetana

A few years after my son was born, my dad was diagnosed with Alzheimer’s disease and vascular dementia. It was a big change for our family, as we shifted to being his primary caregiver. Before my dad was diagnosed, he was a very active grandparent—he loved playing with my son at the park, going on walks, helping us garden, and inviting us over for weekly barbecues and ice cream. But as his health declined, he was no longer able to do many of the activities he loved. He moved from his home to an assisted living facility, then memory care, and eventually was enrolled in hospice care.

Understanding Alzheimer’s disease and other dementias is hard for adults, but it’s especially challenging for children, who see the changes but don’t fully understand why the changes are happening. We realized we had to be honest with our son and explained that his grandpa had a disease that was changing the way his brain worked, that it wasn’t his fault, and that the disease wasn’t contagious. Seeing a loved one decline physically and mentally is hard, and it was important for us to have ongoing discussions about the changes we were seeing, to validate our son’s feelings, and to acknowledge that we felt sad about it too. It was also important for my son to maintain a relationship with his grandpa and to feel like he was doing his part to help—whether it was assisting with his grocery shopping, picking out the flavor of his protein shakes for the week, getting the ice cream when we visited, or drawing pictures to decorate Grandpa’s walls.

Laura sits on the floor of her kitchen beside her dad and son, enjoying vanilla ice cream cones.
Laura with her dad and son eating ice cream.

Despite my dad’s diagnosis, they were able to maintain a meaningful connection through a shared love of ice cream. My dad gave my son his first taste of ice cream when he was a baby and from that moment on, they always enjoyed having ice cream together. After he moved to assisted living, their favorite activity became visiting the ice cream parlor every weekend. When we got my dad’s groceries, my son proudly delivered tubs of vanilla ice cream to stock his freezer, and in memory care they enjoyed ice cream together at the family nights. A few days before my dad died, he asked my son if there was any ice cream. My son asked the nurse, and she gave him two cups of chocolate ice cream–one for each of them. It was their last interaction together and it was a beautiful full circle moment.

Laura smiles and holds a copy of her vibrant Children's book Ice Cream with Grandpa.
Laura holding a copy of Ice Cream with Grandpa.

Their relationship became the inspiration for my book, Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia, which is told from a child’s point of view and beautifully illustrated by Elisabete B. P. de Moraes. It chronicles the loving relationship between a grandson and his grandpa, before and after his grandpa is diagnosed with dementia. It also includes a guide with tips for talking to kids about dementia, hospice, death, and grief by expert on grief and loss, Diane Snyder Cowan, MA, MT-BC, CHPCA. Having these conversations with children can be challenging, and the guide is a great resource to help parents and caregivers get started. It is the book I wish I had at the time, and I hope it helps other children and families navigate their own journeys through dementia and loss.  

After my dad was diagnosed with early stages of dementia, we felt overwhelmed and didn’t know where to turn for help. Where would he go? What long-term care options were there in the area? What resources were there to help? How quickly would the disease progress? How would we explain it to our child? There was so much unknown, and we needed help navigating the road ahead. Not only were we learning about how the disease would affect our dad and our relationship, but we needed to figure out practical things like where he would live, legal matters and finances, and how to access quality care.

My colleague told me about the Alzheimer’s Association 24/7 Helpline (800.272.3900) and I remember spending my lunch break at work on the phone with a helpful staff member who answered all of my questions, and followed up with an email with a link to the Community Resource Finder, information to assist in making long-term care decisions, and a residential care checklist that we were able to print and bring with us when touring different facilities. These resources were invaluable as we navigated my dad’s changing living situation.

Throughout this journey, we turned to the resources for caregivers on the Alzheimer’s Association website to learn about what to expect as he progressed through the different stages of the disease, and how to make sure he got the support and care he needed. Navigating the challenges that come with caregiving for a loved one with Alzheimer’s disease and other dementias can be overwhelming, but knowing that the resources on the Alzheimer’s Association website were just a click away, and that the Helpline was just a call away, was a huge relief. I knew I wasn’t alone on this journey and that support and reliable information would be there when I needed it.

Raising funds and awareness about Alzheimer’s disease and other dementias is so important. There is still a stigma and shame about the disease that can make people feel uncomfortable about sharing their diagnosis and it can be difficult for friends and family to maintain a relationship with loved ones as they progress through the disease. The changes can be physical, emotional, and behavioral—and it can be very hard to witness a loved one who no longer seems like the person you used to know. There were days my dad didn’t believe we were his family. Sometimes he would say “That’s not you!” That was hard for us, and I can only imagine how he must have felt, but we tried to meet him where he was in his reality and eventually, we would gently move on to other topics of conversation. Every day was different, some were more challenging than others, but we continued to adapt and share many wonderful moments together. The more people know about the disease, the more understanding, support, and compassion there will be for people living Alzheimer’s and other dementias—and hopefully with more fundraising and awareness, we’ll advance further towards finding additional treatments and eventually, a cure.

A colorful watercolor illustration of the Grandpa and grandson in Laura's book sharing bowls of ice cream at an ice cream shop.
An illustration from Laura’s book.

I want people to know that no matter how much our loved ones change as they progress through Alzheimer’s disease or other dementias, they are still our loved ones. We can still enjoy spending time with each other, and they can still feel the love and kindness we show up with. The things we enjoyed doing together with my dad changed, but some things remained the same, like our shared love of ice cream. Every week brought new challenges, but there were joys too and those were important to celebrate and cherish.

Some days my dad was very chatty. One day when my dad was in memory care, we suggested my son tell Grandpa some of the jokes he learned in his new joke book. My son succeeded in making my dad laugh, and it was the first time he had laughed in months. That was a moment to celebrate. Then my dad started telling my son some of his favorite jokes, and soon we were all laughing together. That was such a wonderful, joyous moment of connection—and it became the inspiration for one of the scenes in Ice Cream with Grandpa.

Other days my dad didn’t want to talk, but he didn’t want us to leave either. One day my dad and I sat together in silence for an hour, exchanging glances and having a conversation with our eyes. An hour is a long time when it’s our instinct to fill the silence, but it was one of the most beautiful moments that I shared with my dad. In my head I was having a conversation with him, and it felt like he was conversing with me through his eyes too. It was a beautiful moment, one that wouldn’t have happened if I had just said, “Well he doesn’t want to talk, I guess I’ll just leave.” He wanted to talk with his eyes, so that’s what we did. I met him where he was, in his reality at that moment, and I’m so grateful I did.

Find Laura’s book Ice Cream with Grandpa: A Loving Story for Kids About Alzheimer’s & Dementia on Amazon, Barnes & Noble, and IndieBound.

Fashion fundraiser raises thousands to honor organizer’s mom

“It has been a difficult road to accept the effects of the disease,” shares Dan Brophy of his mother’s condition. She was diagnosed with early-onset Alzheimer’s disease in 2015, but Dan and his family noticed symptoms of her condition years earlier. He honors her by hosting an annual fashion fundraiser with the Alzheimer’s Association.

“My family has learned how to navigate the sharp decline in my mother’s memory,” Dan shares. “Over the years, I have learned how to best interact with my mother by providing smiles and love and not letting the pain control my emotions….People who do not have firsthand experience do not realize the other aspects of life it affects. It is something that cannot be stopped. Accepting that is beyond challenging – to accept the deterioration of a loved one’s memory. Because if we do not have our memories, then what do we have?”

Despite its hardships, Dan values the community that his mother’s Alzheimer’s disease has brought to their lives. “My mom has been living at a memory care facility for 5+ years now,” says Dan. “She has received wonderful care and it has been a blessing to meet others with similar conditions.” Dan found encouragement and support by getting involved with the Alzheimer’s Association. 

Four men wear fun accessories and grey The Longest Day sweatshirts at the 2021 Fall Catalogue Night.
Dan and crew at Fall Catalogue Night 2021

Dan teams up with friends and family to host an annual fundraiser called Fall Catalogue Night, an extravagant fashion event which takes place every autumn in Chicago. “Guests are encouraged to wear their most fashionable attire and attend an evening of live music, auction items, beverages, local art, and community with the goal to raise money for the Alzheimer’s Association,” Dan shares. The ninth annual event will be held through The Longest Day, a DIY fundraising program with the Association. It provides a personal fundraising page and year round staff support to guarantee Fall Catalogue Night is successful. 

“The event brings together many friends, some of whom have relatives suffering from Alzheimer’s,” says Dan. The group shares personal stories – both heartfelt and humorous. The event is meant to be “a celebration of life (and fashion)” to uplift attendees while raising critical funds for an urgent cause. Their 2022 goal is to raise over $35,000 for Alzheimer’s care, support and research. 

“Come to Fall Catalogue Night and you will see how fun it is to raise money,” he encourages. “You will also hear from many people about how your money positively impacts those who are suffering.” In addition to hosting his annual fundraiser, Dan participates in Walk to End Alzheimer’s – Chicago. This year, his Walk team has a new member: his new baby daughter. As a new parent, Dan’s fight against Alzheimer’s is more important than ever.

Dan wears a grey The Longest Day sweatshirt while holding his new baby daughter.
Dan and his newest partner in the fight to #ENDALZ

Dan wants to educate more individuals on the Alzheimer’s epidemic. More than 6 million Americans are living with Alzheimer’s. By 2050, this number is projected to rise to nearly 13 million. “It affects so many people,” Dan shares. This should be a worldwide community goal to give everyone access to healthcare and support so they can deal with the emotional toll…It would give me great pleasure to say that my small efforts contributed towards a cure.

Anyone can join the fight for a cure by hosting their own fundraiser with The Longest Day. Whether it’s a lemonade stand, a restaurant give-back night or a large scale fashion show, every dollar raised moves the needle forward. “It should be of utmost importance to get funds for research,” he shares. “The utility that this would bring to the world is immeasurable.” 

Turn an existing event, hobby or passion into a fundraiser for Alzheimer’s. Get started at alz.org/tld. Activities can take place at any point in the year, with many focused around the Summer Solstice (June 21). Join the fight against the darkness of Alzheimer’s with The Longest Day.