“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.
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.
Totally raw and real. Yep – I planned to do makeup and make myself pretty and rehearse a nice tight little 30 second to one minute video – BUT THATS NOT REAL! That isn’t who I am! So here I am brow stubble and all to tell you a tiny teeny bit about #braintumorawareness #btam! Squeezing it in just before the month is out – because I have so much to say! #BTvoice #neuroglial #whotellsyourstory #braintumor #braintumorfighter #tumortwins #sickgirls thank you to @natlbraintumorsociety @stevenlafond for reaching out, and for always being there.
Our friend @mostalkative is sharing her true experiences with brain tumors and asks you to raise your voice, too! Use the #btvoice and let people know your experience and how you are taking action. #btam #btsm #braintumorawarenessmonth
What did you face? What are you doing in the fight against brain tumors? @TheLizArmy shares her story and wants to hear your video story, too! #BTAM #BTVoice Together, we can move toward even more progress. We can do better, we must do better. pic.twitter.com/T9qYvuDcrh
— National Brain Tumor Society (@NBTStweets) May 29, 2018
Today was a packed day of meeting w Congress members and their amazing staff to advocate for more funding support for brain tumor research at the #NIH #NCI and #PRCRP and legislative commitments on behalf of patients with brain tumors and all the people that care about them. Thanks here to Nikki and Brianna in the office of @edmarkey I’m so impressed by everyone who came out to share their stories. Advocacy matters! ESP W GOP CONGRESSIONAL OFFICES! Thanks @natlbraintumorsociety for a well organized and super supportive legislative effort this year! I learned so much. #braintumor #head2hill #head2hill2018 #btam #btsm #btvoice #STARAct #nih #NCI #MAssachusetts
Adding my story as a #BTVoice for Brain Tumor Awareness Month. I lost my husband Patrick to glioblastoma on 7/11/2015. I’m an advocate for the brain tumor community because I want my experience to help others and because we can and must do better for patients and their loved ones. #BTAM #surrendertolive #glioblastoma #widowlife #widow #widower #loveneverdies #frompaintopurpose #meditation #followtheflow #energyhealing #grief #PTSD #BTSM #grieving #healyourself #enlightenment #consciousness #alignment #wellness #advocacy #HPM #palliativecare #BTSMqol #braincancer #braintumor #cancer #carepartner #caregiver