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Editor’s note: This article was originally published on June 25, 2022. The Monier family has now lost 22 family members to ALS (Lou Gehrig’s Disease). The battle continues against ALS. This year’s Walnut 5K for ALS will start at 8 a.m. Saturday, July 6. Registration is available online at https://runsignup.com/walnut5kforals. All proceeds benefit ALS Research. The Walnut event has raised more than $149,600 since it was established in 2011. It raised $25,789 last year.
Hillary Monier lost her mother, Jan Monier, to ALS in 2013 at age 59.
She’s also lost her grandfather, Mick Payne, and uncle, Jeff Payne, 21 family members in all to the dreaded disease, also known as Lou Gehrig’s Disease.
Monier, 32, had a 50-percent chance to carry the SOD1 ALS gene. A year ago, she bravely was tested for it and found out she does carry the gene.
“I chose to be genetically tested for my own reasons,” she said. “That does not mean I have ALS. That does not mean it’s active. It just means that I carry the gene for it. So I’m trying to use that information to empower myself to make little changes in my life. … More nutrition, taking vitamins and supplements that will hopefully help me not contract ALS.
“There’s so many different kinds of ALS out there. There’s the familial one, like we have. There’s different types of familial. We have SOD1 and it’s a slow progressing one compared to others. There’s one gene that people pass away in six months. We don’t have that one and there’s also so many kinds of sporadic ALS out there, so we really need the research and the money and funds to help all those affected by ALS.”
With a desire to raise more funds to go toward research to end this disease one day, Monier and her three siblings, Kristie Cady, 37, Brad, 35, and Jordan, 27, took over as co-directors for the Walnut 5K for ALS a year ago, an event that is understandably dear to their heart.
Monier said former 5K director, Julie VonHolten, of Walnut, has been a Godsend helping the Monier kids’ adventure.
“I don’t know how she did it for so many years,” Monier said. “She definitely helped us a lot last year, returning our emails and messages. She has done such great work and we’re so thankful for everything she has done.”
Monier, who is a physical therapist assistant in Chicago, said ALS has changed her perspective on life. She holds hug a little longer and is more thankful for what her body can do now.
“Growing up in a family that has a link to it makes you view the world a little bit differently. Not take things for granted and really extra thankful for everything you do have,” she said. “After taking over the 5K for ALS, it means so much to have all the community support and outpouring of love and the support in donations and the conversations we have about this disease and the impact it means for other people, too.
“It really hits home, obviously. It just means so much. Every donation we get, every person that shows up, is a really good feeling.”
Brad Monier is proud of his little sister and says she is the tough one in the family.
“I know as the ‘older brother’ and the ‘football player’ that I should be the tough one, but no question it’s Hillary. She has the bravery, grit, and faith that all of us look to and are inspired by,” he said.
Brad said his family is much more than ALS.
“Although the SOD1 gene is in our family, there’s many other great traits that have been passed down through the generations from both Mom and Dad’s side,” he said. “For us kids, we saw Mom go through the fight. We saw the struggle. But more importantly, we saw her faith and we saw her love unconditionally. She didn’t make excuses. She didn’t play, ‘whoa is me.’ Live life to the fullest.
“In addition, our Dad was there every step of the way and no one has a bigger heart than him. Having him, and so many other family and friends’ support, means the world to us.”
Hilllary, a 2008 Bureau Valley graduate and member of the Storm’s 2005 state volleyball team, draws inspiration from her mother, who was their biggest fans as well as their teammates, courageously showing up at their events as long as she could.
“Mom was so strong and she was a person that got things done. She would bring out the best in you just from giving you a look. And that could be just myself and my family, but even my friends and my teammates,” she said.
“She really did see the best in you and expect that from you and nothing less than that. She worked hard for every thing she had and I think everyone else knew it, too.”
Brad has also tested for the SOD1 gene and has found he does not carry it. Kristie and Jordan have elected not to test for it at this time.
“It’s a heavy decision to make because it does obviously impact your physical, mental and emotional parts of your life,” Hillary said. “Brad and I have chosen to be tested at this time, and we’ve received a lot of support from our siblings. And I support them for not getting tested, too.
“ALS research right now is crazy. The last three years, even the last five, it has changed so much. There’s so many drug trials almost in their last stage now that are greatly impacting and delaying and stopping ALS.
“For myself, finding out I had the gene, I’m just trying to stay up to date with all the research and get in to any drug trials I can for pre-symptomatic to try to stop it before it starts.”
Hillary said their cousin, Sarah Gascoigne, from Amboy, is one who is benefiting from these drug trials.
“She got ALS when she was 26. She’s 28 now. She has been on a drug trial for Tofersen. She’s doing awesome. She hasn’t progressed really the last two years at all,” Monier said. “She’s going to be at the race and she’s doing awesome.”
Kevin Hieronymus is the BCR Sports Editor. Contact him at khieronymus@bcrnews.com.