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A Hero's Journey
Like many young adults in their early 30s, Kelly was planning a future that included working hard to advance her career — making her mark while setting the stage for the professional legacy she wanted to leave behind. However, on April 27, 2023, Kelly’s vision and plans took a dramatic turn when she was diagnosed with Amyotrophic Lateral Sclerosis, more commonly known as ALS.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It causes progressive muscle weakness, impacting movement, speech, swallowing, and breathing. Quite literally, every voluntary movement is affected.
Based on U.S. population studies, according to the ALS Program at the Hospital for Special Surgery, an accredited ALS Certified Center of Excellence, “a little more than 5,600 people in the U.S. are diagnosed with ALS each year — approximately 15 new cases per day. It is estimated that as many as 30,000 Americans have the disease at any given time. Most people develop ALS between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, rare cases of the disease do occur in people in their 20s and 30s.”
Unfortunately, there is also no cure.
Most of us can’t imagine how we would handle a diagnosis like Kelly’s. Others of us have walked roads of sorrow and grief and know precisely the emotions that follow: shock and disbelief, anger, a sense of loss for the life anticipated or planned, anxiety and fear, and acceptance.
While many people never make it to a place of acceptance, that is not Kelly’s story. Certainly, she felt natural shock and sadness when she received her diagnosis. However, she drew strength from an unexpected source — the lessons learned from walking alongside her husband during his battle with Leptomeningeal Disease.
A Path to Purpose
In 2019, Kelly’s husband passed away from his illness. But his unwavering optimism throughout his battle left Kelly with an invaluable truth: a terminal diagnosis does not signify the end of life. And as the reality of her situation took hold, what emerged was not despair but rather an unexpected sense of profound gratitude mixed with a newfound appreciation for life.
Kelly’s family and friends provide her with a valuable support network and a constant reminder of how fortunate she is. She adds, “Through it all, my mom has taught me the importance of finding goodness in each day. [It’s] a guiding principle that continues to inspire me.”
As Kelly began learning the facts about the disease and navigating the realities of living life with ALS, she also found her path to purpose. Although the realities of the disease can seem dire, it’s also where hope took root.
As a result, Kelly has made it her mission to spread awareness and offer support to those impacted by ALS.
Kelly’s family and friends provide her with a valuable support network and a constant reminder of how fortunate she is. She adds, “Through it all, my mom has taught me the importance of finding goodness in each day. [It’s] a guiding principle that continues to inspire me.”
As Kelly began learning the facts about the disease and navigating the realities of living life with ALS, she also found her path to purpose. Although the realities of the disease can seem dire, it’s also where hope took root.
As a result, Kelly has made it her mission to spread awareness and offer support to those impacted by ALS.
"Experiencing a terminal illness diagnosis at 32 is an unimaginable challenge. Despite the challenges posed each day by the disease, I am grateful for the ability to maintain my independence, pursue full-time work, drive, and engage in activities I love — all with the unwavering support of my friends and family.”
Giving Back, Not Giving Up
To the people who know Kelly best, she is a true hero. She advocates for others, not because she desires recognition but because she desires a world that is better for everyone. Maya Angelou once said, “I think a hero is any person really intent on making this world a better place for all people.” And in many ways, that is part of Kelly’s mission.
Her first step started by researching advocacy groups run by individuals living with ALS that support people living with ALS. It was here that she found Team Gleason, a fundraising and advocacy group founded by Steve Gleason, a former NFL special teams player for the New Orleans Saints, who was diagnosed with ALS in 2011.
His mission not to “give up — on himself, on his family, or on others also living with the disease” — resonated with Kelly, and she joined their efforts. Team Gleason “brings assistive technology, equipment, and robust support services into the hands of ALS patients.” Their efforts help people living with ALS thrive, not just survive, their diagnosis.
Kelly recently raised $7,000 to support Team Gleason's vital work, which included their efforts to provide:
Advocacy in Action
While Kelly’s young life certainly has been marked by adversity, she has not allowed circumstances to eclipse her. And true to Steve’s words, no doubt remains that a hero has been born in Kelly.
Yes, her fundraising efforts with Team Gleason are important and impactful, but Kelly’s advocacy efforts are far-reaching and go beyond simply raising funds.
ALS-related support includes:
- Participation in drug trials.
- Fundraising for the ALS Association.
- Collaborating with the Kansas University Motor Neuron Disease Research Department to advocate for more treatments to relieve ALS symptoms.
- Providing over 400 samples of her voice to a speech accessibility program at the University of Illinois, hoping to improve platforms like Apple and Google's understanding of people with unique speech needs.
However, her passionate contributions also extend to numerous charitable endeavors directly supporting her local community. Whether working with the Fundamentals Committee, JVM Realty’s corporate social responsibility (CSR) resource group, or other nonprofit organizations, Kelly’s philanthropic efforts are making a difference.
Community Initiatives Include:
“Kelly is one of the brightest lights I have had the pleasure to work with. Her positivity and ability to bring a smile to your face make you want to deliver that to others as well. We are lucky to have her as part of our team at JVM.”
- Heather Sapp, Senior Regional Manager at JVM
You’ve likely heard the expression that “not all heroes wear capes,” and it’s an apt description of Kelly. In light of a devastating diagnosis, she has shown extraordinary resilience and commitment to making a meaningful impact through charitable initiatives and volunteerism.
Kelly’s dedication is a testament to her character and unyielding spirit, demonstrating how one can work through personal challenges while making a profound and meaningful impact on the lives of others.
Words of Wisdom
Kelly leaves us with two thoughts:
- Why Volunteer? Sometimes, people think they are too busy to volunteer — or maybe just are unsure about what to do or where to start. However, Kelly reminds us that "Volunteering enriches lives, both yours and others; it's the smallest acts that often make the biggest difference." With that in min, we think Nike says it best: Just Do It.
- Facing a terminal diagnosis (either yours or a loved one) and unsure how to respond? Kelly shares a poignant reminder, “Amidst the challenges, cherish each moment and focus on creating meaningful memories. Embrace the love and support around you, for it is through love and compassion that you can find light even in the darkest times.”
About Kelly
Kelly Marben was born and raised in Minnesota but moved to Kansas City eight years ago for work. Her mother, stepfather, and brother still live in Minnesota, while her mother-in-law, father-in-law, and brother-in-law all reside in Kansas. She has two dogs, Tasha and Winnie, and enjoys hobbies such as baking, spending time outdoors, and refurbishing furniture.
She’s a sports enthusiast, particularly passionate about college and NFL football, and a devoted fan of the Green Bay Packers and LSU Tigers. Additionally, she’s a true crime fan who loves diving into a good true crime podcast or documentary.
While Kelly started her multifamily career 14 years ago, she joined the JVM Realty Corporation team in 2019. Before serving in her current role as the Multifamily Compliance and Performance Manager, she was a Community Manager.
Grace Hill’s Impact Hero Awards Program recognizes individuals who go above and beyond to help others and make a difference in their local community. Learn more.
Learn More About Our 2024 Impact Hero Finalists
Mindi Kissling
