A local Pittsburgh family was devastated when their father, Kenny Kieffer, was diagnosed with Epidermoid Brain Tumors when his son, Sam, was just seven years old.
The father of three and husband was diagnosed with general epidermoid brain tumors, which are dead skin cells that collect on pockets of the brain, and all of the tumors can't be removed without hurting the brain. These skin cells form and group, take up space, push on nerves, and create major problems. He was diagnosed in his 30s and Kieffer was in so much pain, saying things like "I'm ready to jump off a bridge"; hence the nickname the tumors have received, the "suicide tumor". Some have felt that they are so painful they can't keep living with it.
But, the Kieffer family was given lemons and made lemonade, literally, and young Sam began fundraising efforts for the extremely rare brain tumors, beginning with lemonade stands.
"I was a little kid and my mom told me he was diagnosed with a brain tumor with no cure," Sam said. "I felt really bad, and I wanted to do something to help, so I started with lemonade stands outside my house."
The location of the lemonade stands progressed, with the family setting up on main roads and then local events, including soccer tournaments, the Jam on Walnut event, and Farmer's Markets around Pittsburgh. But, when the COVID-19 pandemic hit in March 2020 and selling drinks became a health risk for many individuals, Sam wanted to move on to bigger fundraising means.
Pulling his inspiration from his family's shared love of hockey, with the help of his mom, Sam, now 14 years old, began the annual Save the Brains hockey event, complete with raffles, merch, and three separate hockey games. This weekend, on July 30, the third annual Save the Brains event will be taking place at the Alpha Ice Complex, which donated the ice time to the fundraising events.
With a $60 registration fee, any hockey player at any age or skill level can play in a 'pick up' style game, with games being separated by age group. Anyone can enjoy the game for free, and purchase raffle tickets for a chance to win prizes from 24 prize packages, including Pittsburgh sports teams merch from the Pirates and the Penguins, an arts and crafts basket, a pressure cooker basket, a kitchen tool basket, a coffee basket, a Coach purse worth $400, and more. Plus, sponsors including Antler Grafix, Cappy's Café, EchardMarquette, Santucci Kitchen, and more are helping make this event happen.
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The proceeds of this event will benefit the Epidermoid Brain Tumor Society, a support group for those diagnosed and their families. Because of the disease's rarity, only 1,400 people worldwide are members of the non-profit organization. According to one of the Chairmen of the Board for the organization, Denise Isenhour of Austin, the University of Washington has become a partner of the nonprofit and is undergoing research efforts towards finding the reason for the development of the rare brain tumors.
"We have members from all over the world: India, the UK, Africa, and Japan. We are a very diverse group," Isenhour said. "Sadly, it affects people all over the world, our research partner is trying to find the 'why', why does it happen in utero."
Since these tumors are not cancerous and cannot be eliminated with chemotherapy, the only relief patients can get is through surgery to remove the skin cells. Isenhour, who was diagnosed herself with Epidermoid Brain Tumors 18 years ago, is known as a 'watch and wait' patient, as she hasn't needed surgery, and just needs to monitor her daily activities, which are limited. For example, prior to her diagnosis, she was an avid scuba diver, taking archaeological dives frequently, but now can only dive to a maximum depth of 20 feet. Additionally, she can't ride roller coasters and finds herself fatigued easily.
"We really appreciate the Kieffers helping us, since it's so rare, there's not a lot of money to figure out how to stop it," Isenhour said. "Although it's something that you can live with and since it's not cancer it's not as devastating, it impedes parts of your brain that affect breathing and bodily function. It can be just as damaging and painful. The life expectancy is different, and we don't have chemotherapy, we have surgery."
So far, Sam has raised about $50,000 for the organization and the research that goes towards finding the cause of the tumors.
"Realistically, the goal is to get as much research as possible towards finding a cure," Sam said. "Getting research started is my main goal, to try and see if it's possible to find a cure is the best I can do, even if it's not possible."
Sam and his father have a close relationship, and it hurt him to see his dad in pain. The two will be playing together in the ages 13 and up hockey game, as many father-son duos will.
"You're just so proud to see that your child is actually taking a chance and trying to do something," Terri Kieffer, Sam's mom and Kenny's wife said. "As a parent, you do everything to help your children, he saw a need to help his dad right away because he saw he was in pain. It's mind-blowing, and he's been consistent with it ever since. We are the luckiest parents in the world. He has a good heart and a lot of empathy for people. It's pretty incredible."
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The Epidermoid Brain Tumor Society frequently shows gratitude for Sam and the Kieffer family on their Facebook group, which is private and only admits those diagnosed and family members, given the diagnosed loved ones permit admission.
"It took a young boy, being concerned about his dad, to go out and do something. He has more energy, gusto, and gumption than a lot of our members do. They do donate and have fundraisers, but he actually went out and comes up with such clever ideas," Isenhour said. "We're sad his father was diagnosed, but when you start looking for the lemonade, his lemonade is that he's allowed us to start with our research, and contributing to a researcher that is trying to find out the why."
Although Sam has taken on bigger fundraising means with the Save the Brains hockey event, his nine-year-old sister will be taking over the lemonade stands.
Visit the Save the Brains Facebook page for more information and to sign up if you're interested in playing.
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