On June 24, Kelly Murrie will give a speech. She will walk through Forest Park, and she will wear a shirt that reads, “Grace, courage, humor, hope.” This is Murrie’s ninth year participating in the Walk to Defeat ALS, one of nine years of honoring her older sister, Tammy Hardy, who lost her life to the disease in 2008.
Amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease, is a progressive disease that affects nerve cells in the brain and spinal cord. Those with ALS eventually lose the ability to move and control their movements, often leading to total paralysis. The prognosis is grim: ALS is fatal, with a life expectancy of two to five years from diagnosis.
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Tammy was only 33 years old when she was diagnosed with ALS. “She was an avid runner, and literally just started getting kind of clumsy—had a couple of falls on the treadmill,” Murrie says, adding that she’s observed people associating ALS with older folks, when it also affects young adults. “The disease itself is this slow paralysis, so basically these families are watching their loved ones become prisoners in their own bodies.” Tammy had ALS for just over six years and passed away at 39, Murrie says.
ALS patients’ mental faculties remain in tact, even as the disease progresses, Murrie explains. “So they’re acutely aware of what’s happening to them; it’s not as if body and mind are slipping at the same time.” Even so, Tammy “remained as charming and as funny as ever until the last minute,” Murrie says. She remembers her sister continuously making people laugh—dressing as Lou Gehrig for Halloween and wearing a Monty Python pin which read, “I’m not dead yet.”
Tammy sent an email that exemplified her perspective: “She said, ‘I may have ALS, but ALS does not have me,’ and that’s absolutely how she carried herself as the disease progressed.”
Murrie helped form “Team Tammy Hardy” for the Walk to Defeat ALS in the summer of 2009. “For me, walking has been a way to honor her memory,” Murrie says. “I walk for the thousands of steps that she didn’t get to take.” Murrie has also been involved in fundraising efforts with the local ALS Association chapter—helping raise money for research and equipment necessary to assist an ALS patient.
Murrie will serve as honorary chair at the event for the second year in a row. “I try to carry on in a way that I think my sister would—in a way that I think she would be proud—to honor her and her memory.” As honorary chair, Murrie serves as a voice for the walk, helping publicize the event and the cause, as well. “It’s really a way for me to get involved and share my family’s story,” Murrie says. “I think that by having someone in the role who has been personally affected by the disease, it can be inspiring to patients.”
Murrie says her level of involvement with the ALS Association has been enabled by Dowd Bennett law firm, where she is a partner. Since Murrie joined the firm in 2012, Dowd Bennett has supported the ALS Association as a major sponsor.
The walk is family-friendly and will have food and live music. “I just really think the walk itself is so important because it allows for these patients to come out—and not just patients, but their caregivers, and just really feel the support,” Murrie says. “It is such a daunting journey, and one that is really hard, I think, if people feel like they’re facing it alone.”
Walk to Defeat ALS will take place Saturday, June 24 in Forest Park. Walk check-in is at 8:30 a.m. and the walk begins at 10 a.m. Choose between 1- and 3-mile events. For more information, visit the website.
