NORTH CANTON, Ohio — Every two weeks.
That’s how quickly a North Canton woman sees significant declines in her health, caused by the neurodegenerative disease known as ALS.
Make no mistake, there’s plenty of fight left in this mother and grandmother. And she’s using that determination to make difference in the lives of ALS patients who are living with the fatal disease now – and for those who have yet to be diagnosed.
“The problem with ALS is that it’s not only a death sentence, but it’s an ugly one,” Susie VanVranken told us from her home in North Canton. She doesn’t mince words, even as ALS has begun to attack her speech. The disease is moving rapidly, since her diagnosis in August of 2019.
“The symptoms are hideous to say the least,” she added.
If you are from North Canton, chances are you know Susie or her family. Her father was legendary Hoover High School head football coach, Don Hertler Sr. Susie’s brother Don Jr. also held the title for many years too. Susie taught health and physical education, volunteered for countless organizations and, until last December was on the North Canton Board of Education when ALS forced her to step down.
ALS, of course, is Amyotrophic Lateral Sclerosis, a neurodegenerative disease that strikes nerve cells in the brain and spinal cord. It’s also known as Lou Gehrig’s disease. What you call it doesn’t matter. The prognosis is the same. It’s a death sentence.
The average life expectancy for someone with ALS is between 2 to 5 years. About every two weeks, Susie says she notices a change, something else ALS is stealing from her.
“The only positive thing I will say with ALS is it gives you time to prepare for the end, which means thanking people.”
Susie as done that. And the community has thanked her for years of service. She is so beloved that the Hoover High School Marching Band surprised Susie outside her home last August, with a concert just for her.
Video captured Susie tapping along to her alma matter’s fight song, a fitting image of a woman with a battle cry of her own.
“It’s giving me new meaning in life, a new purpose. And my purpose is not for me, but it’s for everybody with ALS,” Susie said.
Before the pandemic, Susie was being treated at the Cleveland Clinic’s Mellen Center, where a team provided occupational therapy, physical therapy and she saw a social worker, and two neurologists. But since March, Susie can’t even have a PT in her home, as it is too dangerous.
So she is focused on what she can do. Her support is behind a platform trial in Boston, at Massachusetts General, that tests multiple drugs at once, reducing the cost of research by nearly a third and cutting trial time in half. For the first time, in a long time, Susie believes there is hope within the ALS community.
“It’s just giving us a lot of hope, which is great for emotional health, it gives you a reason to keep plugging along,” Susie said.
But what Susie and others with ALS don’t have, is time.
H.R. 7071 could help. The bi-partisan bill would accelerate access to drugs showing promising results in ALS clinical trials, like the one in Boston.
However, for the bill to be introduced to Congress and voted on, it needs more sponsors. Susie and her friends are urging everyone to read about the bill and consider signing it.
“You know, nothing gets done if people aren’t willing to fight,” Susie said.
And she does fight. Gathering signatures and support for a bill that could change thousands of lives, even if one of those lives is not her own.
“It may be too late for me, but I am willing to fight to help other people,” Susie added.