NORTH CANTON, Ohio — One year ago, we met Susie Van Vranken, a North Canton woman living with ALS, also known as Lou Gehrig’s Disease.
Since then, ALS has done what ALS does – steal.
Susie’s story is hard to tell. Over the year, she has shared how the disease continues to attack her body.
But she still pushes forward, fighting for herself, and others who will come after. She and countless other ALS patients and their loved ones want early access to promising therapies, that are held up by red tape. These are not drugs that will cure this terminal disease, but they may offer more time.
ALS steals time too.
But that’s not why we caught up with Susie at her home recently. She wanted to share another story.
ALS is a very lonely disease. It can isolate those with it. Friends, not knowing what to say or what to do, may stay away.
Don’t.
Susie wanted everyone to see why the power of friendship and the power of laughter can do wonderful things – no matter what reality you are facing.
It’s true what they say: laughter is the best medicine. And on the last weekend in September, Susie Van Vranken got a mighty dose.
“It just helps so much to know that there’s people in your lives who just know when it’s time to reach out and that’s what this group is,” said her lifelong friend Dena Barry Logan.
They are the girls from Hoover, the class of 1974. Their school pride and Viking spirit is on display as they gather at Susie’s house.
The stories range from “who dated who,” to “who was the smartest,” “who got caught trying to ‘borrow’ a construction company sawhorse,” and “how did that dead skunk end up in Susie’s car?”
The stories are wide-ranging, but always have the same outcome: laughter that brings tears to your eyes.
The Hoover girls have come from all over: California, Arizona, Indiana and in state: Cleveland and Columbus. Susie planned all the getaways over the years. And in a way, she planned this one too.
“We had to plan it that far out because she had that many conflicts. She’s got a group in Florida, they’re coming up. She has college friends coming. We know we’re her best friends, though,” said Dena, Amy and Stephanie during a recent Zoom interview.
The laughter and teasing offer a break from the reality of ALS Susie’s ability to speak is fading. We timed our Zoom interview ahead, so Susie could rest her voice for the reunion, which she still uses to push for fast-tracking promising therapies and cutting through red tape.
“It’s just so ridiculous that they are moving so slowly for ALS,” said Susie.
Alongside her every step of the way, her lifelong Viking family who have become warriors for Susie, and in the fight to improve the lives of everyone connected to this horrible disease.
“Allow them the expanded access to try all these things. Don't shut them down. These patients need this, their families need it, their friends, new friends,” Amy implored.
Her friends need Susie, just as much as she needs them. And that’s what this weekend is all about.
More memories to make. More laughter to share.
Among friends for life, these girls of North Canton.
“We want to be here as much as we can be because we love her. And also because she’s just so fun,” said Stephanie.
We wanted to share a message from Susie, who is still fighting, and will continue to use her voice and computer to help those touched by this disease.
From Susie Van Vranken
"It’s important for the general public to understand ALS is still fatal for all & we are literally begging for “drugs in bodies” (therapies), for our FDA to start working with us to save lives & to receive serious pressure & support from our politicians. We are currently asking the FDA to allow early access & approval of 2 drugs after 2 trials instead of 3. If the FDA refuses to be flexible with 2 drugs with enough proof of success after 2 trials, then NOTHING will be available to the ALS community for FOUR more years.
You can learn more by visiting the Susie V foundation below:
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