By Emilie Lee
EVP, Global Analytics & Chief of Staff
Let’s go back to 2011, when the symptoms began. I was in my 20s, living in Santa Monica, and every morning, on my sunny 20-minute walk to work, Mom and I would have our daily phone call. Living a plane, train, and car ride away from my parents in Illinois, the daily-ish check-in that had originally helped me feel a little less homesick after the move, became our routine. And it was during these phone calls I noticed she couldn’t recall what she’d done that morning, she’d repeat the same question or story from the day prior (or even twice in the same conversation), and she would miss family members’ birthdays – a significant red flag as she was the queen of sending out cards.
In 2012, after numerous tests, Mom was diagnosed with early-onset Alzheimer’s at the age of 60.
At that time, Alzheimer’s was not something that was openly discussed. It certainly wasn’t a common conversation when you’re 24 and living in LA. I didn’t see much discussion on social media, and the government wasn’t prioritizing research or the needs of caregivers. So, for two years, my family and I sat with Mom’s diagnosis, squeezing her tight and trying to focus on the positive.
It was Seth Rogan’s congressional testimony in 2014 when Americans finally saw a more open conversation around Alzheimer’s. He said “Americans whisper the word ‘Alzheimer’s’ because their government whispers the word ‘Alzheimer’s,’ and although a whisper is better than the silence that the Alzheimer’s community has been facing for decades, it’s still not enough. It needs to be yelled and screamed to the point that it finally gets the attention and the funding that it deserves and needs.”
Witnessing that, we decided to take action. After his speech, Mom and Dad, who moved to Florida to live a quieter life, started to look for clinical trials in the area to contribute to Alzheimer’s research, and she was accepted into the Engage & Emerge Clinical Trial with Biogen. Meanwhile, in California, I shared Mom’s diagnosis (with her approval) to call attention to the disease on social media, and our bug for fundraising began.
Over the course of five years, we completed one half marathon, and three SoulCycle charity rides, and participated in and co-chaired multiple Walks to End Alzheimer’s in Illinois and California. By taking action, we became more inspired than ever and our community multiplied. With the help of my husband, I started a social media campaign to connect millennials and caregivers of all ages across the world to ensure we keep the conversation going. We were making a difference.
Then on January 31, 2020, Mom couldn’t recall that she had a daughter or her granddaughters. Our fire was dimming.
Later that year, we decided to move from California to Illinois to be closer to her and our family. With each visit, seeing Mom fade to the point of unrecognition was the hardest challenge of my life. Our smart, graceful perfectionist had her dignity and her life with her husband and grandchildren stripped from her.
On June 6th, 2022, after nearly 11 years of battling Alzheimer’s, Mom was free. We were free.
Although Mom is now free, our fight continues. Someone in the world develops a form of dementia every 3 seconds. There are over 55 million people worldwide living with dementia in 2020 and this is expected to hit 78 million by 2030.
I also fight because my mom is my hero. Remember the clinical trial Mom was a part of? It’s now an FDA-approved drug that slows down the progression of Alzheimer’s, giving you more time with your loved ones if the diagnosis is caught early enough. In January 2023, a similar drug was approved.
I learned kindness and openness from her – she was open-minded in a small-minded community. I learned how to be a confident woman in the business world – she paved the way for women at her accounting firm. The list goes on.
Over the last year, with the help of my incredible Just Global community, family, and friends, our 2023 fundraiser, Norton Tees, raised over $3,000 for the Champaign Walk to End Alzheimer’s. This takes the Sanders Lee total funds raised from the last eight years for the Alzheimer’s Association to over $80,000.
Through sharing my mom’s story and sharing the ways my family has taken action, I’m hoping to inspire others to take action as well.
There’s an upcoming opportunity to make an impact, by joining Just Global at the Chicago Walk to End Alzheimer’s on October 7th. Whether walking or volunteering (all free), it draws attention and awareness to the disease which is critical to making an impact.
If you are unable to walk, please consider donating to the Just Global walk team – these funds help fund critical clinical trials like the one my mom was in. It helps fund programs, like the 24/7 Crisis Hotline that acts as a knowledge resource for caregivers who may require help as late as 2 AM.
If I may offer some advice, if you sit in a position of leadership, ensure that your team members know that their health and family are the priority. During my mother’s nearly 11-year journey, Just Global, along with my previous employers, were always incredibly understanding when I needed to jump on a plane or stay a little longer to care-give. This helped massively with my mental load.
Lastly, if Alzheimer’s has impacted you or your family, I encourage you to share your story. It’s painful, but you’ll help someone feel less alone. And you’ll raise awareness for the disease and critical resources, like the Alzheimer’s Association.
Making a difference takes just one step at a time. Join us in the fight to end Alzheimer’s.
In memory of Emilie’s mom.
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