Tampa, FL - On March 26th, runners and walkers across the globe will be lacing up their shoes, pinning on their race bibs and adding a finishing touch that defines what unites them.
War paint for a shared battle.
The Battle Run for ATRT raises awareness and funds to fight ATRT, a very rare, fast-growing tumor of the brain and spinal cord that usually occurs in children aged three years and younger. More often than not, ATRT robs these children of their lives. The few who do survive face lifelong limitations from the imperfect treatments that saved them.
“We can and we MUST do better,” says Dr. Kosj Yamoah, a Tampa oncologist whose son Zion was just four years old when he succumbed to ATRT in July of 2016. In Zion’s memory, Yamoah and his wife Jaymi founded Hope4ATRT, a nonprofit research and resource clearinghouse for families of children with ATRT. Its Battle Run for ATRT raises funds for much-needed research. The Run has also become a rallying point for those who love and support kids with ATRT through their treatments and beyond.
WHAT: Battle Run for ATRT
WHEN: Saturday March 26, 2022
WHERE: Anywhere and everywhere – the Run is virtual, so participants choose a place and time on March 26th to run or walk, and post their team’s photos and times
HOW: sign up or donate online
“ATRT is an extremely rare disease, but it’s not rare to us,” explains Jaymi Yamoah. Connecting with other families of children with ATRT gave her strength as she watched her son bravely go through treatment. “As well-meaning as everyone was, most don’t really understand the fight we faced except those who have been through it themselves – our ‘battle besties,’ as I call them.
“If other people only knew the battle we were facing - if only we could walk around with war paint, maybe they would give grace more freely,” says Jaymi. That’s how the Battle Run for ATRT was begun.
Across the country in Colorado Springs, Colorado, Leo’s parents are preparing to put on the war paint for this year’s Battle Run. Just one year old, Leo has already been through aggressive chemotherapy, proton beam radiation and a relapse since he was diagnosed with ATRT at just three months of age. Right now, Leo’s scans show no evidence of disease. But as his mom Megan Whitfield says, ATRT is very sneaky. They’ve signed up for the Battle Run and will be praying Leo’s next MRI in April will still be clear.
Across the globe in Australia, friends and family will be part of the Battle Run in memory of a little girl who died just shy of her second birthday. Mary Kate Funk of Rosedale, CA was diagnosed with ATRT at just 14 months of age when her right eyelid suddenly became droopy. Despite multiple rounds of high-dose chemo, Mary Kate was a giggly girl who loved dancing to The Jackson 5 with her siblings. This year, they’ll be honoring her memory with her Aunt Megan and family in Australia, donning the war paint for Mary Kate.
Another ATRT warrior from California is the war-painted “face” of the Battle Run. The girl on the Run’s banner, Kinsley Adelynn Wilkerson of Sacramento, turned seven in January 2022. She’s spent more than half of her life battling ATRT, including multiple surgeries, chemotherapy, radiation and three relapses. Yet she’s still a bright and happy girl who loves playing with her siblings, Ryland and Avila, as well as their dog Pismo. As Kinsley often likes to say, “Today was the best day of my life!”
Donations to the Battle Run are already at work, funding scientists searching for answers. A list of grants underwritten in part by Battle Run dollars can be found on the Hope4ATRT website, www.hope4atrt.org.
Hope4ATRT is a research entity of Out of Zion Inc, dedicated to directing resources and research to families in the fight. Hope4ATRT provides a single dynamic site where parents can go to find all the information, they need to navigate their child's diagnosis, to know exactly what to do, where to go for treatment, and what resources are available to them. Hope4ATRT, also supports ATRT research with experts in the field to make sure parents have the relevant information they need and presented in a way they can easily understand. To learn more visit www.hope4atrt.org, and connect on Facebook, Twitter, and Instagram.
FOR IMMEDIATE RELEASE
March 18, 2022