It’s a devastating disease with no cure. You might know some of the famous victims of amyotrophic lateral sclerosis, or ALS — last year, scientist Stephen Hawking and Spongebob’s creator Stephen Hillenburg died from the disease. Locally, it’s not hard to find families struggling to cope with the disease. They all agree: more awareness is needed.
If you asked Sallie Perez Saiz what her mother’s calling was, she’d easily answer education.
“She loved it. She loved her students. That was her whole life, being an education,” Saiz said.
However, that calling became harder and harder to do starting in 2011. That’s when Saiz’s mother was diagnosed with ALS, but Saiz said signs came years before.
“She had the drop foot, which started in 2008. It wasn’t advancing, though, so even at the time they diagnosed her they’d been running tests for at least two years. They were still kind of not certain,” Saiz said.
Perez passed away on Jan. 13 and her room now serves as a reminder of how the disease affected her life. But no matter what she lost, like her ability to walk and to breathe, she never lost her will to help students.
“She was still high functioning at that time. Even though [going off] what we consider high functioning, we’d say that’s not high functioning,” Saiz said. “But for her, she was still doing a lot.”
That’s what makes this disease tragic, according to neurologist Dr. Mark Stecker. People are completely aware of what’s happening as they lose their basic function.
“They’re still struggling to be a useful member of society, while they know that all these other things are happening to them,” said Stecker.
ALS typically hits middle-aged people. There isn’t a definitive cause, but we know it degenerates motor nerve cells — which effectively destroys peoples’ motor functions, like holding and eating.
As far as treatment, there are only two FDA-approved medications, but no cure. Most live only three-to-five years after diagnosis.
“The biggest thing we can do is support them: help them breathe, eat, be active, communicate during the course of their disease,” Stecker said.
In 2014, the viral ice bucket challenge put ALS on the map. It raised $115 million for the ALS Association and money from that is credited for discovering a gene tied to ALS in 2016.
That challenge is how Eric Amador discovered ALS months before he himself was diagnosed. The 25-year Navy veteran and former executive chef at the White House, now uses his eyesight to speak on his Tobii Dynavox machine.
He said something like the challenge needs to happen again, but adds progress is being made on the awareness front.
“Just recently I have seen several commercials. I can really say we are moving in the right direction and bringing awareness throughout,” he said.
The ALS Association Golden West Chapter continues to work to spread awareness — currently organizing a golf classic at the Belmont Country Club for the first time in May. That month is ALS Awareness Month.
Stecker said any kind of awareness is welcome because in the end, to find a cure, it requires a lot of money.
“It’s money, time, effort and nothing happens cheaply,” he said. “To develop a drug that can work with this is so much money.”
Here’s more info on the Inaugural William Miller Memorial Celebrities and Heroes ALS Golf Classic. You can also click here:
- Friday, May 17, 10:30 a.m.
- Belmont Country Club, 8253 E. Belmont Ave., Fresno, CA 93737
- Sponsors needed
- Contact Anita Martin at (559)284-8185 or at firstname.lastname@example.org for more information.
Here’s info on the local Golden West ALS Association Chapter support group:
- 3rd Saturday of each month
- San Joaquin Valely Rehabilitation Hospital, 7173 N. Sharon, Fresno, CA 93720
- No RSVP required
Of course, don’t forget about the annual Central Valley Walk to Defeat ALS. It’s set for Oct. 27 in Woodward Park in Fresno. You can click here for more information.
For more information about ALS and The ALS Association Golden West Chapter, please click here.