NORTH CANTON, Ohio — North Canton educator, mother, grandmother, community leader and ALS warrior Susie Van Vranken passed away last week. For the past year, Susie courageously allowed us to profile her life with the disease, and her battle to get promising drugs fast-tracked.
Susie’s personal battle may be over, but she built an army of warriors who will continue to take up the fight she valiantly started -- for everyone touched by ALS.
Doctors diagnosed Susie with amyotrophic lateral sclerosis in August of 2019, but the symptoms had been there for a while. Back surgery months earlier had led them in a different direction.
Tests ultimately confirmed the news Susie’s family and wide circle of friends dreaded: ALS was now a part of all their lives.
“You know, nothing gets done if people aren’t willing to fight. It might be too late for me, but I am willing to help others.”
This is what Susie told us the first time we met during a Zoom back in October of 2020. And in the 12 months that we stayed connected, she never wavered.
“The minute she got the diagnosis, she started fighting. She started to figure out what she could do to move legislation along and how she could educate us on how to do that. And that was Susie,” recalled Dena Logan, when we spoke to her a few days after losing her lifelong friend.
The average lifespan of someone diagnosed with ALS is 2 to 5 years. Susie lived for 26 months, and she made the most of every second.
Not just fighting for ALS patients, but still enjoying life and the friendships she built throughout.
“She made us promise that we’d keep the trips going and keep the connection going. But in truth, she was always the glue, the one who stayed in North Canton. She was our travel planner for our trips. So we’re going to fulfill that commitment to our friend,” said Stephanie Jarrett, another Hoover Class of ’74 member, and lifelong Susie friend.
The trips and stories and laughter will go on, as evident in late September when the girls from Hoover; the Class of ’74 got together again. But there is no denying Susie Van Vranken will be missed.
“That’s what fills my heart because, we just didn’t know what sort of condition she’d be in. And I think she willed herself to be able to communicate, to be able to join in. I just think it was her way of ‘I’m going to hold on for this. And then it might be time,’” said Dena.
Less than two weeks after their fun-filled gathering, Susie passed away, in her home, with family by her side.
“Obviously her leaving, her being gone leaves a great big hole in all of our hearts. And we’ve been talking a lot the last couple of days about how we’re trying to fill that hole with happy memories. Because we have a whole lot of them,” said Stephanie.
“I look at the, the hole she left in our group it's she even brought all of us even closer together. Even though we were close to begin with, we, we became even closer with our weekly zoom meetings and, or calls and, and I think, um, that was part of her purpose too, before she left us,” said lifelong friend and Class of ’74 graduate Amy Mann.
Susie left her Hoover friends with something else too. A necklace from her own collection, given to each of her friends.
“These are necklaces that she bought over the years in Florida. There was a particular designer where she went, that she liked. And every year, she saved up, and this was her indulgence. She would buy another piece of this designer’s jewelry. So, it was jewelry she selected for herself. But in the end, she decided that distributing it to our group of friends was what she wanted to do,” said Stephanie.
The women wore the jewelry in one of their final group pictures of Susie. They treasured the pieces when they first received them and cherish them even more now.
Susie’s legacy lives on.
The Susie V Foundation was founded to help further research for those affected by amyotrophic lateral sclerosis (ALS) and provide scholarship and grant opportunities for local students and school organizations. The foundation honors the legacy and values of Susie Hertler Van Vranken.
It also lives on in family too. Susie is survived by her husband Tom, and sons Jon (Olga) and Ben (Marisa), as well as granddaughter Providence Jane (“PJ”). Although Susie had hoped to meet her second grandchild, baby Barrett arrived four days after her passing, no doubt, with a very special guardian angel watching over his arrival. So important to Susie, the family delayed her obituary, so that Barrett could be included.
You can learn more about the Susie V Foundation HERE.
*On a personal note: it was my great honor to get to know Susie Van Vranken in the last year. Her passing hit hard. She became a friend.
I realized ALS takes so much from you, and in Susie’s case, that included the ability to get a good night’s sleep. She used those hours in the dark to email and send links. There are emails you don’t want to see when you check your phone first thing. Susie’s were always welcome.
I learned a lot from her and not just about this insidious, wretched disease. When we first met, Susie said, “the only good thing about ALS is that it gives you time to say goodbye.” She was right.
I learned how to talk about death and the unpleasantness of decline. Susie talked about no longer being able to do things for herself and relying on others for simple tasks. Her message for anyone else going through the same battle: “get ahead of it.” Get the wheelchair before you need it, or the machine that banks your own voice before it fades away. Susie was on top of everything. I can not lie: it's a difficult conversation, but vitally important.
I had to ask Susie about dying. That was hard. You always want to think there’s hope for the people you meet. Susie’s hope was not for her, but for those who are months or a year or two behind her. She talked honestly and openly. She wanted to talk about promising trials, what was happening on Capitol Hill, which lawmakers were lending their voice to fast-tracking drugs, and which were staying silent.
She also wanted to know about me, which I found unnerving at first. If roles were reversed, I imagine being consumed with my own situation, unable to look outward. Not Susie. She asked me about my family, my youth, my children. I shared that my mother was going through some health issues. From that point on Susie always asked how she was doing. Even her last days. That was Susie.
We laughed too about silly things, unimportant things that carry more weight than they should. My sense of humor is not for everyone. But Susie laughed. Maybe she was being polite. Or maybe she understood it. Either way, I’m grateful.
A week before she passed, Susie sent me an email, thanking me for my friendship and our talks over the past year. I didn’t realize it was a goodbye, but now I do. I will treasure it always privately. But I did want to share one small part, to all of you who have followed Susie’s story.
She wrote….”The three stories that aired on TV gave HOPE. So I’m sure they did the same for others. You also educated the public in a variety of ways. I’m confident great things are on the horizon that will give ALS patients HOPE!
Your support & friendship are such a blessing.
Sending love & appreciation,
Susie💗”
Thank you for being my friend Susie. I miss you and will never forget you. 💗 Susan Moses