A fatal disease sparks the spirit of advocacy, philanthropy

BEACON OF HOPE FOR ALS

Tammy Hall and her husband Louis have advocated on Capitol Hill for amyotrophic lateral sclerosis awareness and funding for research and support for patients and their families.

Tammy Hall understands the finality of amyotrophic lateral sclerosis.

She also knows there’s more to life.

Hall, founder of Beacon of Hope for ALS, aims to lift people up and help them after their diagnosis. Amyotrophic lateral sclerosis, a terminal disease also known as Lou Gehrig’s disease, causes nerve cells in the brain and spinal cord to die.

Hall, an endoscopy nurse at Atrium Health, started the nonprofit after her husband Louis was diagnosed in 2020. The organization’s mission is to help people with ALS and their families cope with the disease with resources and advocacy, including support groups, caregiver assistance, and financial aid for medicine.

“The reason I started the foundation is because of my husband, number one,” she said. “And, also, because the disease is so rare that it doesn’t get talked about as much as cancer or Parkinson’s and all that. It's not getting the recognition I feel that it should get, because it's such a deadly disease.  When you have Parkinson’s and [multiple sclerosis] you can actually go into remission, and you actually can live a long time. But with ALS, your life expectancy is two to five years in most cases.

“I started this because, for one, my husband. He is a veteran, and I thank God that the [Department of Veteran Affairs] takes care of my husband’s needs. However, there's other ALS families that I have met since we've been going through this journey that are not as fortunate as me and my husband.”

Beacon of Hope for ALS is hosting a launch/brunch event on Oct. 19 from 11 a.m.-2 p.m. at Spaces by Premier, 2010 Monroe Road. Hall said that she is well on her way to reaching her initial monetary goal for the foundation.

“My goal is $10,000 by Oct. 19, which is my launch, and we are already at $8,500,” she said. But my goal is to help those patients or clients or friends or family members with whatever their needs are and to make their life as comfortable as I can. It is devastating for families. And a lot of times when you get these diagnoses, you go into a denial stage, and you just stay there.”

Hall was there when Louis was diagnosed. It didn’t help that he wasn’t diagnosed until three years after showing symptoms.

“It took three years for them to diagnose this, and they misdiagnosed him with gastric reflux,” Hall said. “He had two surgeries, until I was adamant. They have to be an advocate themselves to really be diagnosed. Don't stop because one doctor's telling you something. This started in 2017 and he was diagnosed in February 2020, and at that time, typically, for many people it is too late to start medication, because you have to start it at a certain point to slow the progression.”

Louis can still walk, albeit with a cane, but Hall believes if he had gotten a proper diagnosis sooner, things may have been different. That’s why she is pushing for people to advocate for ALS awareness.

“Sometimes you have to make that doctor aware of what you think it might be if you ever heard of something like ALS,” Hall said, “because people or the doctors don't think about ALS first.”

When someone receives an ALS diagnosis, their mental health is often affected. Hall said she and Louis stressed but found a way to press forward. ALS may be terminal but fighting every day and doing maintaining normalcy helps.

“I just keep thinking positive,” she said. “We travel, we go out to dinner, we do everything possible that we can do like normal living. I told my friend Kyla, because her husband's going through it, and she's in that mode [of denial] … ‘You guys got to keep moving. You have to deal with it, but you still have to keep living your life. You can’t let it bring you down. You can’t let it stomp you in the ground. You have to keep going.”

Hall hopes her nonprofit can help spread awareness about ALS until there’s a cure. Until then, she will keep encouraging people impacted by the disease to live to the fullest.

“I just speak from the heart,” she said. “I just let [people] know that whatever God has, he has, and whatever card we were dealt, we are dealt. But what we do with it is how we continue to live. We can continue to live each day to the fullest. Every day that they get up, they walk, they eat, they breathe, and they talk. That's another day that we can live that day – full.”

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