Family members of one Dawson County man are carrying on his legacy of supporting others impacted by the rare disease ALS. 

Dawson County resident Alisa Cain and her late husband, Joe Cain, were recently recognized with the Muscular Dystrophy Association’s “Steve Ennis Award” during the nonprofit’s 16th annual “Night of Hope Gala,” held March 25 at Atlanta’s InterContinental Buckhead Hotel.

ALS, also known as amyotrophic lateral sclerosis or Lou Gehrig’s disease, is often fatal within two to five years of a person’s diagnosis. 

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Joe passed away in November after a two-year battle with the disease. 

“We expected it to be emotional,” Alisa said about the event. “However, it was the hump that the family needed to get over or through [our grief]. Seeing some of the people and faces still going through it (ALS) is a reminder that we still have a long way to go.” 

The MDA advocates for more research, advancing care and supporting patients and their families who are living with muscular dystrophy, ALS and related neuromuscular diseases, according to their website, www.mda.org.

“We are so grateful to you for joining us in celebrating the journey and life of Joe Cain and the entire Cain family and being a part of helping to end ALS with MDA,” stated the nonprofit’s Facebook post after the gala. “We were able to raise over $700,000 to benefit ALS research and the Emory ALS Center.”

Money raised because of the gala will directly support ALS research. Since the event’s inception, over $10.5 million has been raised for ALS research efforts, with local funds going to the Emory ALS Clinic, the post stated.

Their journey

The Cain family became more involved with area advocacy efforts after friends and coworkers of Joe were diagnosed with the disease. Joe and Alisa became actively involved by attending two prior Night of Hope galas and four Fiesta 5K walks, which benefited the Emory ALS Center. 

A summer trip to Lake Lanier and subsequent concerns about Joe not being in shape, limping and possibly having back issues spurred the Cains’ visit to an orthopedic doctor, who then referred him to a neurologist. 

Joe’s October 2020 ALS diagnosis by an Emory doctor “still kind of blindsided” them despite their previous awareness endeavors.

After that time, Alisa became her husband’s main caregiver, considering everything from retrofitting a handicap van to buying a towel warmer, using different lift slings and helping with his cleaning and hygiene needs. 

Joe was eventually given a feeding tube for his nutritional needs due to concerns over aspiration pneumonia, and he started relying on a breathing trilogy machine to give and take air for his lungs. 

Hospice personnel and a social worker were also brought in to help care for Joe at times where Alisa and her family could not or needed a reprieve from caregiving. 

Neighbors and other community members also rallied around the Cain family as Joe’s disease progressed, helping with meal trains or praying regularly for them in their front yard. 

One time, 60 neighbors and friends prayed over a blanket, sealed it in a bag to keep it fresh and then gave it to Joe’s family. 

“We have faith and without our faith, we absolutely wouldn't be sitting here, because our faith is very strong,” Alisa said in October. “Definitely on the bad days, when it’s hard to get up…it helps to know there’s other people praying for us.” 

Alisa added that they’d also kept their spirits up by laughing at their inside jokes and even with some of their experiences dealing with the disease. 

“We even laugh at certain stuff with ALS, like, ‘Oh my gosh, who thought we’d be doing this?’”, Alisa said.

Neighbor Deanna Dickinson, who’s known the Cain family since they moved to the county, has been a particular source of support. 

“No matter what, you notice that through this entire process, their attitudes and his (Joe’s) smile has been wonderful,” Dickinson said. “They’ve been a blessing to everybody, even though they’re going through this.” 

Dickinson co-chaired the 2023 Night of Hope Gala’s Executive Committee alongside Cumming resident and another of Alisa’s friends, Amy Spivia.

During her and Joe’s advocacy efforts, Alisa said they’ve looked to organizations like the Steve Gleason Foundation that would pay for lifts that insurance doesn’t cover and various medications developed to address disease symptoms.

Organizations like the ALS Association and MDA have been aggressively fundraising research into the disease because those efforts, as with other rare disorders, are underfunded. 

MDA is pursuing research to get to the root of ALS causes and how to develop treatments for the disease. Those research efforts have been boosted by the discovery of ALS-causing genes. 

“We want to see it cured with no one having ALS,” Alisa said in October, “but we also want to see when people are facing it, that they get everything they need.” 

Now, Alisa said she wants to take the “continued love and support” families like hers have received and work with Dickinson to help bridge the financial gap for people who do not get help through Medicare for caregiving services for someone with ALS.

Amidst the extreme toll and effort that caring for someone with ALS took, Alisa said she and her family have become closer from their whole experience. 

“We were recognized as a family that held onto our strength and faith and loved him until the end. Seeing Joe going through what he went through and staying so graceful…it taught us to be thankful and try to live each day [the best we can],” Alisa said, “even when we don’t feel like it and to give ourselves grace even when we really don't feel like it.”