May is Brain Tumor Awareness Month! Share your voice and raise brain tumor awareness: Download our free toolkit and spread the word.

MindMatters White Logo

Making Memories a Thousand Miles Apart

Share This Content:

A virtual experience and community that anyone can join, no matter where you are.

Last year, getting together with family and friends was difficult. And it still is. The coronavirus impacted everyone’s lives and interrupted normal routines, on top of the heightened concern for our health and wellness. But it didn’t stop this sister and brother from celebrating the six-year anniversary of beating back a brain tumor at the ABTA Breakthrough for Brain Tumors 5K Run & Walk (BT5K) virtual fundraising events.

Susan of Overland Park, KS. was diagnosed with a meningioma six years ago. She remembers a very scary time for herself and her family.

“[The brain tumor diagnosis] came out of nowhere,” said Susan. “But then I realized that technology has come so far that my doctors and surgeons had confidence in the successful removal of the tumor. It gave me hope.” 

Then there’s Steve, Susan’s younger brother from Denver, CO. The special thing about Steve is he’s a BT5K insider.  He’s knows the ins and outs of each 5K race as the operations manager – the guru of logistics and event set up when the 5Ks were in person.

Three months into working with the American Brain Tumor Association...we found out that my sister was diagnosed with a brain tumor.

“Three months into working with the American Brain Tumor Association and organizing their BT5K events, we found out that my sister, Susan, was diagnosed with a brain tumor.”

But in the six years of managing the logistics for the BT5K events, Steve and Susan could not participate in the event itself. Steve was either working the events or Susan couldn’t make the schedule fit.

“When we held the New York City race, I mentioned changing [vacation] dates to join the race. I sensed interest but not necessarily a connection,” said Steve. “And that’s what I love about BT5K virtual events, everybody can feel a part of the community anywhere.”

When the pandemic changed lives in 2020, the ABTA virtual 5K event finally gave Susan and Steve an outlet to celebrate Susan’s six-year survivorship.

Susan (center) and her family walking in celebration of her six-year survivorship

It was Christmas Eve, and Susan was getting ready for the holidays and a family road trip. But every time Susan smiled, she would experience excruciating pain that spiked through her face and body. Chalking it up to the stress of the holidays and the pending trip, Susan didn’t think anything of it and went on with her plans. But things didn’t feel right. She continued to experience extreme pain with each smile, then trouble sleeping. She started to vomit while on vacation, and took the strongest over-the-counter pain reliever she could find.

When Susan returned home, she decided to go to the ER. Doctors ran an MRI and found a brain mass the size of a tennis ball. It was pressing down on the part of the brain that impacts her sense of smell. True to her sunny nature, her first reaction was amazement at seeing an image of her own brain and the tumor.

“It was surreal. I never thought this could happen to me,” said Susan.

Once out of surgery, doctors diagnosed Susan’s tumor as a low-grade meningioma. Each year, nearly 400 people are diagnosed with meningioma tumors.

Six years after diagnosis, Susan is well and says side effects are minimal, including a loss of smell and a “misshapen” head from the surgery.

“I’m thankful for all the scientists and doctors and their discoveries in finding the most effective treatment against my brain tumor,” said Susan. “That couldn’t have happened without the many patients and families that came before me.”

5K Like No Other

In 2021, five regional ABTA Breakthrough for Brain Tumors 5K Run & Walk virtual events will be held to honor and celebrate those impacted by a brain tumor diagnosis. These events help you stay connected with your community and raise critical funds for brain tumor research and patient support services in safe and meaningful ways.

BT5K participants can join anywhere, anytime – from your neighborhood, hometown or a get-away vacation. You can make it your own experience with resources and tools provided by the ABTA.   

When you register and join the event, you get to:  

  • Personalize the event with a dedicated fundraising webpage to share your story, photo and add team members.
  • Connect with your teams or other participants through the event mobile app. The BT5K Your Way event app offers participants the ability to track their racing progress; receive real-time, real-location progress alerts; and build momentum with encouraging messages from the ABTA, your team or another participant.
  • Gain the support and expertise of fundraising through a new Fundraising 101 resource video.

After you register for your BT5K, you’ll receive a packet with your BT5K performance shirt, assigned race bib and finishers medal. Participants have two weeks to complete the 5K route, ending in a live online celebration with prizes, giveaways and so much more.

Making Memories Together

The BT5K virtual events places the participant experience at the center of its virtual design. For Susan, the event gave her family a purpose and an activity they could commit together. “We put on our shirts, turned on the race app and walked our 5K route around the neighborhood,” said Susan. “To our surprise, our neighbors saw what we were doing together, so they got involved too. It was so easy and fun. It attracted the attention of others who were looking to be part of a safe celebration.”

“I’ve been so involved with the BT5Ks and have a personal connection with brain tumors through my sister, and it was sad to consider that we couldn’t celebrate her recovery during the pandemic,” said Steve. “But this event really touched me, and gave us an opportunity to get together and celebrate a thousand miles away, while doing it our own way.”

Your Dollars at Work

Since 2006, the ABTA BT5K events have raised more than $20 million for brain tumor research and support services.

New this year, BT5Ks are pulling back the curtain and giving participants a chance to witness the impact of these events for brain tumor scientists, including a look into how ABTA grants fuel innovative research and discoveries in the lab.

Funds raised through the BT5Ks also supports patients, caregivers and families through:

  • Free educational events that present the latest treatment and care at webinars, virtual patient and family conferences and meetings
  • Transformative programming, including panel discussions and COVID-19 updates for the brain tumor community
  • Peer-to-peer mentor programs and Careline phone support
  • Online discussions groups with experts

Learn more and register for a BT5K Your Way today or email events@abta.org with any questions.

Related Stories