A Loss That Sparked Purpose
In 2004, Casie Shimanski’s younger sister Kellie died at just 18 years old.
Kellie wasn’t diagnosed with cancer. But the similarities haunted Casie—the symptoms that mimicked what friends and cancer patients would later describe, the multiple organ system failure that doctors could never pinpoint to a single cause.
The loss could have ended there. But for Casie and her sister, Kellie’s death became a catalyst for action.
“My youngest sister is a marathon runner as well, so she also does a lot of fundraising for a variety of organizations, both of us working in memory of Kellie,” Casie explains.
For Casie, that purpose eventually found its way to children’s cancer research through St. Baldrick’s Foundation. But it didn’t start with a master plan.
It started with a photographer.
From Photography to Passion
In 2011, Casie was working as a photographer—weddings, families, portraiture. Through connections and what she calls “six degrees of separation,” St. Baldrick’s Foundation found her and asked if she’d photograph their fundraising event.
She said yes.
“I showed up that one event back in 2011, learned the realities of children’s cancer. I think most people go into it thinking it’s a rare thing. It’s really not that rare. Every two minutes worldwide a child is diagnosed,” she recalls.
In the time it takes to have a conversation, children are being diagnosed with cancer.
At that event, Casie watched women and men shave their heads for the cause. She watched the power of that moment. She saw two women go bald and thought: “I could do that.”
She didn’t shave that day—she was just the photographer. But something was activated in her.
The next year, she brought a friend back. In 2013, she and her dad and now-husband shaved their heads together, launching “Team Live Out Loud.”
She’d made a promise to wait until after she was married to shave her own head. A few years later, when that promise was fulfilled, everything changed.
The First Year: $600 to $200,000
Casie’s first year of fundraising brought in $600. She didn’t even shave her head that year. She was just volunteering, photographing, showing up.
“I raised $600. I didn’t even shave or cut my hair, do anything that year. I was just volunteering and photographing again. And then I think as a team, so that would be, I think we had a team of maybe five or six that year. We raised maybe 2 or 3000,” she recalls.
It wasn’t much. But it was a start. It was proof of concept. It was a spark.
What came next was 16 years of something that most people underestimate: consistency.
Every year, Casie showed up. Every year, she reminded people. Every September, she’d start the fundraising cycle again. Every January 2nd, she’d be back at it. Every March, there was a shave event.
The numbers grew: $10,000 in 2015. When Casie finally shaved 19 inches of purple hair in 2018 (just two days after her wedding), she raised $26,000.” —> the team went on to raise I think $28k+ that year. The years kept building. Now, 16 years later, Team Live Out Loud and Casie are closing in on $200,000 raised for children’s cancer research.
For eight consecutive years, Casie has been a top fundraiser for St. Baldrick’s. Her team has been a top fundraising team for eight consecutive years.
The Secret: Consistency (Not Magic)
When people ask Casie how she raises so much money, they want an easy answer. They want to hear that big checks just roll in. They want to believe in overnight success.
Casie’s answer is harder, and more honest: consistency.
“The number one question I think I’ve gotten over the years is how do you raise that much money and it’s consistency. I think people want the easy answer of I just ask people for money and it shows up. I would love for that to happen. Big checks rolling in, that would make my work a lot easier. But it’s the consistency, it’s the community aspect of it, it’s showing up, it’s doing the work, and most people don’t want to hear that. They want the easy answer and there’s not one,” she explains.
This is the unglamorous truth about fundraising and advocacy: it’s work. It’s showing up when you’re tired. It’s posting when you don’t feel like posting. It’s asking for $5 knowing that $5 is a lot of money in today’s world.
“I am actually really terrible at asking people for money specifically,” Casie admits. “But going back to 2011, Casie asking for $5 is a lot. It still is.”
Yet she asks. Because every year, people say yes.
The Strategy Behind Showing Up
While consistency is the foundation, Casie has learned specific strategies that keep momentum building:
1. Integrate It Into Your Life
Casie got married at the venue where she shaves her head. Her vows included a fundraising ask. Her honeymoon was tied into the fundraising narrative.
“I had posts that were scheduled out to go live, as we said, I do reminding people we are now married. This is a part of this whole weekend event. And just kind of, again, tying people into it that way,” she explains.
This isn’t opportunistic—it’s strategic integration. She’s not separating her fundraising life from her personal life. She’s weaving them together.
2. Build on Prior Momentum
“It is just a lot of showing up and again, sort of harnessing that energy that you built on from the year prior and every year is really different,” Casie says.
She doesn’t start from zero each year. She references previous years, reminds people of what they’ve accomplished together, and builds on that foundation.
3. Make It Feel Fun, Even When It’s Work
One of Casie’s most important insights: if you don’t make it look fun, people won’t want to participate.
But she’s clear: “I have to constantly remind people it’s not easy. I don’t just get to ask people for money and have it show up. I have to keep chipping away at it.”
There’s a balance between making something feel light and enjoyable, while being honest about the work required.
4. Use Multiple Channels
Casie combines social media content, blog writing, videos, podcasting, and one-on-one conversations. She uses email campaigns around World Cancer Day. She paints her nails orange for Children’s Cancer Awareness Month.
“Even one of the things I had my nails painted once for, I think Children’s Cancer Awareness Month, that just orange, and I had a little ribbon on one of them, and I was at a doctor’s appointment and the receptionist asked me, said, oh, I love your nails. And I said, oh, thanks. They’re for Children’s Cancer Awareness Month. And she said, oh, I didn’t realize that was a thing. And we just got into talking and I kind of shared some things, and by the end of the day, she had a hundred dollars at my link, and I didn’t even ask her for money,” Casie recalls.
You plant seeds. Some of them grow into flowers.
The Power of Shaving Your Head
One of the most visible aspects of Casie’s advocacy is shaving her head. But what does that actually accomplish?
“A lot of it is, it’s a conversation starter and it is really showing the kids that bald is beautiful,” Casie explains.
Children with cancer lose their hair from treatment. Seeing adults voluntarily shave their heads sends a message: bald is beautiful. You’re still beautiful.
“You have girls of all ages from high school to two years old losing their hair. Hair. And so showing them that bald is beautiful. It’s actually one of my favorite looks,” she says.
This is also why she doesn’t need your hair—she needs your money. The hair is symbolic. The money is what funds the research that keeps children alive.
Understanding the Need
Casie has educated herself and others about the realities of children’s cancer:
Every two minutes, a child is diagnosed with cancer worldwide
One in five won’t survive
Of those who do survive, an overwhelming majority will have lifelong disabilities, disorders, or diseases
Children are often treated with adult chemotherapy and radiation doses, even though a child’s body is smaller
There are 27 different types of children’s cancer, many with no connection to behavior or lifestyle (kids don’t smoke, don’t drink)
Children are treated in hospitals when they should be living normal childhoods
The research St. Baldrick’s funds is working toward safer treatments that will extend lives, not just by years, but into healthy seventies and beyond.
Defining Advocacy: Consistency With Heart
When asked how she defines advocacy, Casie’s answer reveals the philosophy behind 16 years of work:
“It’s really just showing up continuously for a cause. And usually that cause is something you’re quite passionate about, but it’s the consistency part of it. Yes, I know the facts and the stats and I can kind of rattle off numbers, but it’s the heart behind it and why it’s so important and why this cause needs attention.”
Consistency. Heart. Purpose.
Measuring Impact Beyond Numbers
While Casie tracks the dollars—nearly $200,000 toward children’s cancer research—she measures impact in other ways too:
The work itself: She puts in at least 200 hours of volunteer work almost every year. She’s done legislative work, advocated for funding, appeared at events across the country.
The quiet after the storm: There’s a pattern to her energy. She fuels it, pushes through to March, then has a “lull” where she recharges. But she always comes back.
The stories: A woman at a doctor’s appointment who saw her orange nails and ended up donating $100. People who tie their participation to major life events—anniversaries, milestones, memories.
The momentum building: Every thousand dollars funds a potentially lifesaving clinical trial. Team Live Out Loud has generated enough to fund 200 potentially lifesaving trials.
The Pragmatism of Advocacy
Casie is remarkably pragmatic about her work:
“I obviously look at the numbers. Oddly, I’m not a numbers person either, but the past 16 years have shown me that I actually am.”
She knows exactly where they stand toward their next milestone. She knew 2024 would be difficult, so she set a realistic goal of $5,000 (just to hit $200,000) instead of pushing for more. But in difficult years, they’ve still raised at least $10,000.
“I’ve had to train myself to not just assume that or not take that number for what it is, but also what I’ve put into it,” she says.
This is important for anyone considering fundraising or advocacy work: results are tied to effort. If you want different results, you need to put in different work.
The Vision
When asked what she’d like to see happen, Casie’s answer is simple but expansive:
“I would obviously love to find a cure for all of them.”
But she also knows the practical path: better science, more funding, better legislation, more research backing. She knows that every thousand dollars funds a clinical trial. She knows that if the money flowed differently in the world, they could do so much more.
For now, she does what she can—and she does it consistently, year after year, with heart and a sense of community.
How to Support
Casie’s fundraising link is active year round. Because of how she’s set it up with St. Baldrick’s, every link redirects to the current year’s fundraising page, no matter when you donate.
You can find her easily by searching her name online. Her handle is Captain Casie, and her team is Team Live Out Loud.
Whether it’s $5, $100, or more—whether it’s during the intense March fundraising push or in the quiet months after—every dollar goes toward research that keeps children alive and gives them back their childhoods.
What Casie Wants You to Know
If you’re thinking about getting involved in fundraising or advocacy work, know this:
It’s not as easy as it looks. But you can make it look easy enough that people want to participate.
Consistency matters more than dramatic gestures. Show up. Do it again next year. Do it the year after that. The compound effect of showing up is what changes outcomes.
You don’t need perfect conditions to start. Casie started with $600 and no clear plan. What she had was a cause, a willingness to try, and a commitment to show up again the next year.
People want to be part of something. They want to feel the heartbeat. They want to know their $5 matters. They want to see the work being done. Give them that, and they’ll return year after year.
Most importantly: “I need your money. The hair is a nice to have.”
Your support matters. Your consistency matters. Your willingness to show up, again and again, is what changes lives.
To learn more about turning your own health journey into purpose and impact, visit
https://frompatienttoadvocate.com
where you’ll find resources, stories, and practical guidance for advocates at every stage of their journey.
