Monier family continues the fight against ALS

The battle against ALS (Lou Gehrig’s Disease) hits at home for the Monier family.

They’ve now lost 22 family members to the dreaded disease, including their mother, Jan, in 2013 at age 59, and their grandfather, Mick Payne, and uncle, Jeff Payne.

Most recently, they lost their uncle Jay Payne, a member of the 1982 Walnut Blue Raider state football team, on July 24, 2022.

The Monier siblings - Brad, Jordan, Hillary and Kristie (Cady) - became co-chair of the Walnut Run/Walk for ALS in 2022. Their father, Don, also helps the cause.

Each family member had a 50-percent chance to carry the SOD1 ALS gene. Brad and Hillary chose to be tested for ALS. While Brad showed no signs of the gene, Hillary proved to be positive. It does not mean she has ALS, however.

Their two siblings have chosen not to be tested.

There has been much progress to help treat ALS. This year’s Walnut Run/Walk for ALS on Saturday, July 6 will help that battle with all proceeds to benefit further ALS research.

“We know there is a lot of progress that still needs to happen to help treat and stop ALS, but several of our cousins are receiving Toferson (Qalsody) which was approved by the FDA in April of 2023. Our cousin, Jessica (Payne) Morris of Walnut, is lucky enough to be one of them,” Hillary said.

Morris, a mother of three active kids, is the oldest daughter of Jeff Payne. Her symptoms started March of 2022 with her official diagnosis coming in October of 2022. She had her first Toferson injection in December of 2022 and has experienced some relief.

“I had progressed to the point of needing a wheelchair for most activities outside of my house and I had to crawl upstairs. I wasn’t able to raise my left leg independently,” she said. “I now use a cane for almost all activities unless I go somewhere where a great deal of walking is required. I can climb stairs with the use of a banister only. I can lift my left leg independently.”

In an article for “Cafe Mom,” Morris shared she was able to go snorkeling with her children in Grand Cayman to see the stingrays while on a cruise in the middle of the ocean, climbing up and down a ladder under her own power.

She said doctors noted improved resistance in her weak leg during a physical exam in April of 2024 compared to when she started treatment.

Registration is available for this year’s Walnut Run/Walk for ALS online at https://runsignup.com/walnut5kforals. Registration fees are $20 by Friday, June 28 and $25 after, including race day. T-shirt deadline is June 28.

There will be payments of $100 to the first-place finisher, $75 to second, and $50 to third place overall.

Brad Monier said there was a record number of entries last year with 541 participants and they are “looking to build on that.”

The Walnut event has raised more than $149,600 since it was established in 2011. It raised $25,789 last year alone.

The event could get a boost with the Walnut High School Super Reunion being held that weekend as well.

Kevin Hieronymus has been the BCR Sports Editor since 1986. Contact him at khieronymus@bcrnews.com