Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on April 19, 2024 in CommunityEOY, Fundraising, Stories
Kelly T. cheered on more than 100 runners at the 2023 Bob Burns Memorial 5K while holding up two giant number balloons to celebrate 10 years of her Fundraise Your Way event that she started in her father’s memory.
Kelly’s father, Bob, was diagnosed with oligodendroglioma when she was 16.
“He worked in construction until he couldn’t work because he started having seizures,” Kelly explained. “He was mobile and talking but just having seizures, so he was home and bored. We spent a lot of time together after school then.”
As Kelly neared high school graduation, her father grew pretty sick, so she made the difficult decision to stay home and attend a local college. She wanted to help her mom, as her siblings lived at home. Sadly, her dad passed away at the age of 49.
“Physically, he was gone,” Kelly said. “Verbally, he was gone. He didn’t understand what we were saying and sometimes who we were. It was just a nasty disease.”
Inspired by her father’s memory, she wanted “to live like my dad lived his life, making a difference and living every single day with a purpose.” She had some time on her hands after receiving her master’s degree in occupational therapy. A friend pointed out that Kelly enjoyed running and suggested that she start a 5K fundraiser to honor her dad.
Kelly hosted the inaugural event on the roads around her home with about 75 participants, raising $3,300. The event has evolved over the past decade, bringing in more than $200,000 in total.
The Bob Burns Memorial 5K is now held on a paved running trail along the river in town. With the help of a committee, the event added a Zumba instructor for warmups. Kelly and her committee even branched out into other events throughout the year to reach people who may not enjoy running. In addition to the 5K, they host a golf tournament and two night-out events featuring silent auctions, raffles, and more.
“I can’t imagine my life without doing these events,” Kelly said. “These events fill our cup and are what gives me energy.”
Over the past decade, Kelly has learned much about what it takes to host a successful event. Staying organized has been an essential skill.
“I literally have a checklist for my 5K of what I need to do each month leading up to the event,” Kelly shared. “I just give myself plenty of time throughout the year to do it.”
Kelly recommends the following initial action steps to someone thinking about hosting their first fundraiser:
Another valuable lesson she learned early on is the importance of stewarding her event sponsors to ensure they feel engaged and appreciated. Some sponsors from the inaugural event have remained on board, which is excellent for creating consistency.
“When I first started, I had to go door to door to tell my story and make those connections because it was six years after my dad died,” Kelly said. “I’m spending a lot of time with these businesses and building that relationship so they know [I’m] serious and going to donate this money. Around the holidays, I would make sure to send all of those businesses holiday thank you cards. After my event, I would make sure to send them all a free goodie bag with a race shirt, NBTS swag, and a letter with how much we raised and any updates.”
After hosting their first Bob Burns Memorial 5K, Kelly learned about Head to the Hill — NBTS’s signature advocacy event. Kelly and her now husband drove from Maine to D.C. to join advocates from all over the country as they met with their members of Congress to advocate for the urgent needs of the brain tumor community.
“I didn’t even have to talk to people on the training day for them to know my story,” Kelly said. “I’ve never felt more connected with people in my entire life. For the first time, I did not feel alone in what I went through. I just felt so supported.”
Kelly has taken that unique feeling of relief and understanding from Head to the Hill and tries to provide that vibe to those attending her events, particularly the 5K.
Kelly was first introduced to occupational therapy (OT) when her sister with Down Syndrome began receiving OT services. She enjoyed working with her younger sister on tasks like how to zip her pants, for example. Through her personal experience, she aspired to become an occupational therapist and help kids like her sister.
“But then my dad got sick, and he didn’t have therapy,” Kelly explained. “He just had the caregivers in our house. As I was going through school, I decided that I wanted to work rehabbing brain injury patients, and that’s exactly what I do now.”
Today, she works as an OT in one of the acute rehabs in the state of Maine that specializes in supporting patients with neurological deficits, such as stroke patients, people with brain injuries, or patients who underwent a recent craniotomy.
“We help rehab them from hospital to home,” Kelly said. “We help patients return from their recent deficit and set realistic goals. It could be being able to walk again, talk again, feed yourself, get dressed, cook, or all of these things.”
Bob’s headstone reads, “You have to climb the mountain to see the view.” Bob pursued life — working, snowmobiling, spending time with family, and enjoying the outdoors — with such energy and enthusiasm. This quote accurately depicts the type of person Bob was on a fundamental level.
His daughter, Kelly, conducts her personal and professional life with similar fervor as part of his enduring legacy. She is an essential part of the community that will one day conquer and cure brain tumors — once and for all.
Kelly’s mom once told her, “Your dad would be proud of you, but he wouldn’t be surprised.”
Start a fundraiser in your community like Kelly did in Maine. You can choose the activity, and we’ll give you the resources to make your fundraiser a success! You can help to advance our mission and fuel the breakthroughs we need to find a cure.
TAGGED WITH: brain tumor, Oligodendroglioma, community fundraising