It’s been said that distance means so little when someone means so much. That’s why Madisonville’s Auburn Rose went the distance—over 400 miles, to be exact—in the name of Lou Gehrig’s disease research and in honor of his oldest brother, Carnell.
In March 2015, Carnell was diagnosed with ALS, or amyotrophic lateral sclerosis, an aggressive neurological disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. ALS is caused by progressive deterioration of motor neurons, leading to muscle weakness and paralysis.
Carnell’s diagnosis came as a shock to the Rose family. They had previously only heard of ALS from a distance, but with the harsh reality hitting so close to home, they began researching more.
“We were unprepared for what was coming, not knowing where to go, who to contact and what assistance we could use,” Auburn said. “The importance of awareness can make a huge difference, from knowing what to do in the first few months from diagnosis to getting the proper care needed.”
The family looked into everything they could on the topic, and what they found was disheartening. Roughly 5,000 people are diagnosed with ALS each year—about 14 new cases each day. The unfortunate reality is that there currently is no cure for the disease, but that doesn’t mean it will remain incurable forever. Increased research funding will help scientists get closer to that elusive goal.
In 2017, Carnell lost his battle with ALS—just two short years after his diagnosis. Since his passing, the Rose family has made it their mission to spread awareness and raise funds to hopefully one day find a cure.
Auburn has even taken to the streets, quite literally, to raise awareness by participating in races, rides and walks. He has completed the Tri-State Trek, a bicycle ride spanning 270 miles, from Boston, Massachusetts, to Greenwich, Connecticut; the New York City Marathon; and the Ragnar for Research, the nation’s largest overnight relay, spanning more than 120 miles. He has also accepted the ALS Ice Bucket Challenge, posting to social media a video of an entire bucket of ice water being dumped over his head in the name of ALS awareness.
Most people don’t know that ALS affects every part of the body over time, except the mind.
“Many people feel uncomfortable approaching a person in a [wheel]chair, but don’t be afraid—they are still as lively as they used to be, just slowed down by a terrible disease,” Auburn said. He encourages others to give their time or whatever resources they can spare to raise awareness and help find a cure for this disease.
Awareness is the door and funding is the key; together they unlock the cure. To learn more about ALS, visit als.net.