The brain tumor charity, StacheStrong, announced through their Instagram account that they had signed a partnership with the National Brain Tumor Society (NBTS) to contribute toward a total $500,000 award to help support the GBM AGILE Adaptive Clinical Trial.
“I almost wasn’t going to post the announcement to Instagram,” Colin Gerner, the founder of StacheStrong, says with a laugh, “I’m glad I did because we’ve received a huge response since then.”
Video has been a vital vehicle in telling the story of StacheStrong since its inception following the diagnosis of Colin’s brother, GJ, with glioblastoma (GBM). The Gerner family was the focus of a documentary that has helped to raise awareness about the need for brain tumor research and communicate patient and caregiver experiences.
We asked Colin to sit down with us and answer a few questions about Stachestrong and why they decided to partner with NBTS to help fund GBM AGILE.
For those who haven’t already seen the documentary, can you tell us how StacheStrong began?
My brother was diagnosed with glioblastoma (GBM) in September of 2017, and since he would be away from work for a bit, he started to grow a mustache. My dad and I also grew mustaches in solidarity, and people immediately took notice. I christened our family’s fight “StacheStrong,” and it’s served as a rallying call that’s also embodied GJ’s tenacity and strength. As more and more people began to grow a mustache and join our fight, I realized we had the opportunity to make a much bigger impact. That’s the Gerner way – try to find a positive no matter how bad things may seem.
I spent a few months working on the website to tell our family’s story, thinking we would raise money for brain cancer research along the way. The pivotal moment came when I approached my brother with the website and my plans for StacheStrong. I asked him if he wanted to incorporate StacheStrong into a 501(c)3 not-for-profit charity. If not, we would never talk about it again and simply focus on his fight. Without hesitation, he emphatically said we have to make a difference. That’s the thing about ‘Geej;’ he received a dire diagnosis and is still always thinking about others.
What started as a website to tell our story and hopefully raise a few dollars for brain cancer research has turned into a whole lot more! In the year since our charity was founded, we’ve raised nearly $100,000, and have served as a beacon of hope and support for families across the globe.
Being there for families going through GBM means the world to me and I’ve been lucky enough to meet so many incredible individuals.
How has the response been to GJ’s story?
The response has been absolutely powerful, and we have been blessed to have such an amazing support system every step of the way. This may be one of the most important factors because you truly can’t fight GBM alone. Anyone who meets my brother, visits our website or watches the documentary is inspired by his resiliency and perspective. He’s an easy person to root for and has people around the globe believing they can #DefeatGBM. When my brother was diagnosed, we didn’t have this outlet and I’m ecstatic that we can now provide it for other families.
Through a partnership with NBTS, StacheStrong’s fundraising and support has contributed to a recent $500,000 award to the GBM AGILE Clinical Trial. What about that trial has you excited?
Running StacheStrong is personal to me: I want to find a cure. I believe GBM AGILE can do just that as it is a revolutionary new way of testing and developing brain cancer treatments. Our support for GBM AGILE together will NBTS is going to help launch an innovative new way of conducting clinical research for brain tumor patients.
I love whenever I talk to David Arons (CEO of NBTS) and we discuss strategy and objectives. He always stresses taking ‘shots on goal’ and that’s exactly the case with GBM AGILE – now we just need to score!
What advice do you have for any care partners or siblings of brain tumor patients?
Embrace your new normal. Geej always says he can only control what he can control and while this is easier said than done, we live by it.
Celebrate the victories, no matter how small they may seem. There will be great days and there will be tough days along the road with GBM. After my brother’s recurrence and second brain surgery in December of 2018, he had to relearn how to use a fork and a knife. Three months later he’s golfing and going for runs. As our friends in the GBM community have said, until further notice, celebrate everything!
#LiveStacheStrong each and every day! Get out there and enjoy life together. Soak up every moment because although we never know what tomorrow holds, we know that we have today. For us, today is everything and we hope to have a lot more todays.
National Brain Tumor Society is proud to work with the Gerner family toward a world without glioblastoma.