Locals strive for ALS awareness and research

HUNTSVILLE, Ala. - One of the most notable people of our time with ALS, Stephen Hawking, may have passed away, but people in the Valley are spreading a message of hope about the disease.

Arvid Wakefield died from the motor neuron disease in 2014 at the age of 46. At Topgolf on Thursday, his brother-in-law raised money to find a cure.

"His motto was 'journey on' and so in honor of him and to journey on we established that and we'll continue to support them," said Brian Hinson with Bridgeworth Community Fund.

The 'them' is HudsonAlpha Institute for Biotechnology. Hinson made it into a fun event with other local nonprofits, but this one hits close to home.

"You know you're grasping and searching for inspiration, of course you're wanting treatment and you're wanting a cure," he said.

Michelle Amaral is a senior scientist at HudsonAlpha. 

"We're gonna start a project doing clinical sequencing on some of the patients that come to the Crestwood clinic now," Amaral said. "So a lot of that might let us know what genes might be involved in the disease process."

The ALS Association in Alabama supports families in the meantime.

"With resources, with information, and referrals to things that will assist them because ALS is extremely expensive," said Portia Lang. "We have to have a lot of activities just to fund the things that people need. Wheelchairs what $85, $1000, just very expensive."

Hinson knows about the financial and emotional strain and says it's important to ask for help.

"The impact that has on families, not only of course the one diagnosed, but that debilitating disease," he said. "And how rapidly it happens and how quickly that individual can't care for themselves and cannot function at different levels, at different times, it's really important to tap in to organizations."

According to the CDC up to 15,000 Americans had ALS in 2016.

See upcoming events you can take part in with the ALS Association here.

The other organizations Hinson brought together for his event were Nations of Coaches, RISE School at UAH, and the CAP & GOWN Project, as well as HudsonAlpha's Annihilate ALS.

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