Addie Mae Jessen poses with her parents Zach and Kate Jessen at their Franklin farm in 2020.
SUBMITTED PHOTO
Choose joy.
Two simple words have guided the Jessen family through an ongoing nightmare. When Kate and Zach Jessen’s daughter, Addie Mae, was diagnosed with an incurable, inoperable brain tumor, they forced themselves to remain positive. After Addie Mae died just a year later, they clung to their memories and joys to weather the deluge of grief.
Now, three years after her death, they’ve harnessed their daughter’s spirit and strength to strike back at cancer.
“We want to be a light, and show people that you can still find joy in pain. There’s light in it, even if it’s hard to understand at times,” Kate Jessen said.
Addie Mae’s legacy carries on through the work of Adalynn Strong, a fundraising effort aimed at research to cure all cancers. Friends, family and supporters have announced a new event to help them do so — the Storm Cancer 5K, a competitive race and fun run planned in Franklin on June 2.
Participants will complete a scenic course through downtown Franklin, while the community as a whole can enjoy raffle baskets, tie-dye activities, a bead bar, custom Storm Cancer drinks, a photo booth, face painting and more.
Addie Mae’s life was cut short by cancer. Those who loved her want to be sure others don’t suffer the same fate.
“If we could help one family, even one child, it’s worth everything we do. What we’ve been doing the past couple years, it’s giving children more time, it’s giving them more hope, it’s giving them more options with these clinical trials,” Kate Jessen said. “We’re not there yet, but these kids aren’t getting sent home with a death sentence, they’re getting sent home with options.”
Life changed forever for the Jessen family on July 22, 2020, when Addie Mae was diagnosed with a rare inoperable brain tumor known as diffuse intrinsic pontine glioma, or DIPG. The condition describes a brain tumor that is located in a part of the brain stem called the pons, and controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight and balance.
Approximately 200 to 400 children in the U.S. are diagnosed with DIPG each year, according to the International DIPG Registry. The condition accounts for roughly 10-15% of all brain tumors in children.
The day of her diagnosis, doctors told the Jessens that Addie Mae likely only had six months to live. The rural Franklin family transplanted to Cincinnati, where Addie Mae started treatment at the Cincinnati Children’s Hospital in a clinical trial using a medication known as a BMI inhibitor to enhance the effects of targeted radiation.
She went through 30 rounds of sedated radiation, and initially, the treatment showed promise. Her tumor decreased in size by 33%, and the family moved back to Franklin, buoyed by hope. But in the coming weeks, Addie Mae’s condition deteriorated quickly. She died on May 13, 2021, at age 4.
In the deluge of grief that followed, the Jessen family focused on preventing others from going through similar losses. Addie Mae’s clinical trial in Cincinnati had been made possible by an organization known as The Cure Starts Now.
The nonprofit group focuses on cancer research on those fronts that offer the most promise, regardless of what kind. Founders Keith and Brooke Desserich started the group after their daughter, Elena, died from DIPG. Researchers that the Desseriches spoke with believed finding an effective treatment for the condition would unlock a tool that could cure all types of cancer.
Because the disease is so rare, funding for such research is limited, which is where The Cure Starts Now could make an impact.
Since the foundation started in 2007, The Cure Starts Now has formed more than 40 chapters across the United States, Canada and Australia. The group has raised more than $23 million in research.
The Jessens wanted to be part of that movement.
“The government only allows children 4% of funds for research, and we truly believe it’s going to take a foundation like this who is going to find a cure. We want to fund as much research and trials as possible,” Kate Jessen said. “With this research focused on the biggest bullies, if we can find a cure, we can cure all cancers. I feel like it’s our purpose after Addie passed away.”
They started the Adalynn Strong chapter of The Cure Starts Now shortly after their daughter’s death in 2021, hosting a variety of fundraisers in Addie Mae’s honor.
Over that time, they’ve raised about $190,000 specifically for pediatric brain cancer research. The Storm Cancer 5K is the latest fundraising idea of the group.
“We wanted to get an annual event to make an impact on childhood cancer research,” Jessen said.
The benefit 5K is co-hosted by BAM Weather, a Greenwood-based weather consulting firm that has supported Adalynn Strong and the Jessens from the beginning. Together, they previously raised money not only for research, but provided $20,000 to send a local family struggling with childhood cancer to Florida.
For BAM Weather, the mission of Adalynn Strong resonated deeply.
“We wanted to support it once we learned about their daughter and saw how much it impacted them,” said Michael Clark, co-founder and CEO of BAM Weather. “We have kids of our own and it just really struck a nerve with us so we wanted to help in any way possible.”
The Storm Cancer 5K will start at Youngs Creek Park in Franklin at 9:30 a.m., with registration opening at 8:30. Runners and walkers will complete the race along the Greenway Trail, where signs honoring others impacted by childhood cancer.
“It’s just a way to motivate our runners to remember why we’re doing this,” Kate Jessen said.
Afterwards, everyone will meet back at the park for a community celebration. Organizers have enlisted Kona Ice to serve up treats, while Hometown Nutrition will offer custom Storm Cancer drinks, with a portion of sales going to cancer research.
KIC-IT will feature a make-your-own tie-dye shirt, while the Sweat Shop will have a bead bar. A photo booth and face painting is also planned. All proceeds from those activities go towards The Cure Starts Now.
Seeing all of the support as the event has grown has been encouraging, Clark said.
“For us it’s just helping where we can. We’ve been blessed with a growing business and we believe in helping others. To us it’s just a part of who we are we love to help people,” he said.
Putting it all together has been hard work, as has been much of the work of running the Adalynn Strong chapter, Kate Jessen said. In addition to fundraising, she also serves on a board helping approve grants. The Jessens have a farm in Franklin, where Wrenlee and Waylon, their “miracle” twins — an expected blessing after Addie Mae died — run around with the animals.
Through it all, the memory of their daughter pushes them on.
“We feel like it’s our purpose,” Kate Jessen said.
But beyond the funds raised for cancer research, Addie Mae is helping cancer patients present and future in a truly meaningful way.
After her death, she donated her whole brain to research, which is currently being used in multiple studies as experts search for a cure.
“It’s always a full circle moment when we can present these researchers with these grants and know that she’s still fighting,” Kate Jessen said.
AT A GLANCE
Storm Cancer 5K
What: A fundraiser organized by the Adalynn Strong chapter of The Cure Starts Now and BAM Weather to raise money for childhood cancer research
When: 9:30 a.m. June 2; registration starts at 8:30.
Where: Youngs Creek Park, 237 W. Monroe St., Franklin
Race details: A fun timed run and walk to raise awareness and funds for pediatric cancer research in honor of Addie Mae Jessen, the event will also include raffle baskets, Kona Ice, tie-dye with KIC-IT, a bead bar with the Sweat Shop, Hometown Nutrition custom Storm Cancer drinks, photo booth, face painting, Adalynn Strong t-shirts, and medals.
Cost: Adult, $30; youth, $20; untimed 1-mile walker, $25; virtual, $35, which includes shipping cost for shirt. All registrations include a t-shirt. Register by May 15th to be guaranteed a shirt size.
Information and registration: events.thecurestartsnow.org/adalynn-strongs-storm-cancer-5k
