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Brain Tumor Survivors and Care Partners Raise Their Voices

“I want to make you aware of some of the obstacles that have come in my way since my diagnosis,” Liz Salmi says. As a 10 year survivor, Liz has been an active, honest advocate for the brain tumor community. This short video encapsulates just some of the obstacles she’s faced: she lost her job, had to face down the possibility of death, and what that meant for her husband and her. But the video continued with a positive, bombastic message of hope and a call-to-arms for other brain tumor survivors and care partners to tell their stories.

#BTVoice was reborn. National Brain Tumor Society (NBTS) first used the tag in 2014 to feature quotes and advice from members of the community, using infosnap graphics. This time around, it had evolved into an effort that is directly community-sourced and delivered, providing a visceral, real look into the lives of people living with the effects of the disease, and how they remain in the fight for a world without brain tumors.

The theme for these videos was a simple prompt of two questions: “What obstacles did you face or what did you lose after a brain tumor diagnosis,” and “How did you move forward?”

What obstacles did you face?

“I want you to know I’m living with an incurable illness that impacts me every day.” – Courtney Gessford

“I have to wake up every day and re-introduce myself to myself.” – Miranda Riddle

“My wife had to cut back her hours to be my primary caregiver and to support more at home with our kids.” – Adam Hayden

The costs have been staggering for brain tumor patients and their care partners. Stories of re-learning to walk, speak, and perform regular tasks were discussed openly, as was the death of loved ones. Brain tumors have a very real cost, and surviving them can present real, persistent challenges. However, many move forward, not only for their own care, but to improve the research and treatments options for everyone facing this disease.

How did you move forward?

“I want to advocate for those who can’t be as lucky as I was.” – NASCAR driver, Matt Tifft

“At the end of the summer, I will be graduating as a Family Nurse Practitioner,” Tamara Francis said, “I went back to school to fulfill one of my biggest dreams.”

“I redirected my career, to focus on how I might help more people in healthcare.” -Liz Salmi

Surprisingly, most of the stories ended with brain tumor survivors and care partners talking about how they were motivated to advocate on behalf of the brain tumor community. By reaching out and using their voices, those who shared their stories raised the profile of our disease, helped pass the STAR Act, and get necessary funding for brain tumor research.

Call to Action

“We can do better, we must do better.” – Lisa O’Leary

You can help with that, too. To share your own brain tumor story on social media, you can record a selfie video, or share pictures that detail the obstacles you faced and how you moved forward. Use the #BTVoice tag on Facebook, Twitter, Instagram, wherever you choose to share. By sending these out yourselves, you make more people aware of the very real plight our community faces and personalize this disease, which spurs others to join us in the mission to put an end to brain tumors.

Also, you can take action with us by attending an event, raising your voice, and funding brain tumor research.

Brain Tumor Survivors and Care Partners Gallery

Here are just some of the videos and photos from the #BTVoice campaign so far. We hope to see yours soon.

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