Walk to Defeat ALS: Raising awareness and funds

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KINGSPORT, Tenn. (WJHL) — ALS is a disease that is rapidly degenerative and eventually takes away people’s ability to walk, talk, eat and eventually breathe.

People who are diagnosed need help with care and paying for thousands of dollars in treatment yearly. Now, advocates are kicking off a series of walks across the state — including the Tri-Cities — in hopes of raising both awareness and funds.

ALS symptoms can seem small at first, but then they progressive rapidly.

Alice Sullivan a manager with Donor Relations & Special Events ALS Association Tennessee Chapter, said initial symptoms typically include impacted speech or difficulty with general movements.

Sullivan said on average, most people are diagnosed between 40 and 50 years old. The disease is deadly and once diagnosed, life expectancy is only 2 to 5 years. However, ALS does not impact cognitive ability.

The nearest ALS-certified clinic to the Tri-Cities is in Knoxville. When patients visit these clinics, they get all their care under one roof, from a neurologist to respiratory therapist to speech pathologist. This can create a burden on patients and their families, but not just for the coverage of care.

Often, patients or their caregivers have to stop working, and traveling for care is costly. The money raised from the Walks to Defeat ALS can help these families tremendously.

“We have a general grant program as well that any family that is registered with our association is able to apply for,” said Sullivan. “So, we give those out in $500 increments so if there is something specific that they need or maybe it’s just someone to do their yard and they need that to be done because they don’t have time, then that is able to cover those costs.”

Nearly 20,000 people are estimated to be living with ALS in the country right now, and there is no known cure or cause. The ALS Association doesn’t only provide funds — it also helps people and their families walk through the care and assistance and hosts support groups.

“Have a care service coordinator walk alongside them, so they can help them say, ‘OK, this is what you’re going to do first; this is what you’re going to do next,'” said Sullivan. “‘What does your home look like? What does your caretaking situation look like? Do you work?’ Just things like that — someone dealing with this is feeling very overwhelmed, and they’re not thinking of all the things that may need to happen.”

The ALS Association Tennessee Chapter is hosting a series of five walks throughout the state this year to raise awareness about the disease.

The first is this weekend at the Blake in Kingsport hosted by the Team Italian Stallions.

Those interested in partaking can register to walk in their area. It’s free to sign up, but donations are appreciated.

For those who can’t walk for the cause or give money, advocates say raising awareness to help people get diagnosed or encouraging politicians to help with funding makes a huge difference.

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