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You’re who we fight for: NBTS staff share memories of 2015

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As we pause and reflect on this past year, it is clear that 2015 will be remembered for its many poignant moments. We sadly said goodbye and paid tribute to good friends in the brain tumor community; celebrated new advances in science and research; and continued to advocate (successfully!) for more funding for brain tumor research and treatment development. And through it all, the staff at NBTS continued to be touched and inspired by our work with you, the brain tumor community. What follows are just a few of the experiences we had this year, and how they increased our resolve and motivated us to work that much harder for you.

Kris Knight, Director of Research Program Strategy and Community Relations:

This year I had the pleasure of meeting Kelly, also from my home state of Maine, during Head to the Hill. Kelly lost her dad to a brain tumor and has reached a point in her life that she wants to take up the cause in his honor. She was nervous at first about our visits with members of congress, but as the day went on she became a pro. And, along with her fiance Aaron, she has gone on to do so much more this year. It has been incredible to see her confidence, passion, and commitment in bringing her dad’s legacy forward. Between the fundraising race she puts on in her hometown, radio appearances she made, a video she created, and home visits to her state reps in Maine, she has grown more empowered every day. And she knows she is making her dad proud.

Tom Halkin, Senior Manager of Communications:

When listening to a presentation on pediatric high-grade gliomas – a highly aggressive tumor type in children and adolescents, which NBTS is acutely focused on defeating – a world-renown clinician (who also is a leading scientific researcher) told the crowd: “I am a pediatric neuro-oncologist and an oncologist. Every single child that I have treated with a high-grade glioma didn’t make it.” This was a positively ghastly and jaw-dropping statement to hear. It was also motivating. We haven’t done well enough by these children diagnosed with high-grade gliomas, and I’m committed, though my position in NBTS’ Marketing Communications Department, to help raise awareness and funds to change the prognosis of pediatric brain tumors.

Lauren Bogart, Director of Events:

Team Big Hero Michael

Team Big Hero Michael

I was particularly touched this year by the passion and fight exhibited by parents Jenny and Mark Mosier, who did everything in their power to save their 7-year old son Michael from a DIPG.  They were surrounded at the Race for Hope DC by 273 team members donning yellow capes in honor of “Big Hero Michael.”  Tragically, Michael passed away shortly after the Race for Hope. It’s families like these that inspire me to keep up the fight.

Ann Kingston, PhD, Director of Program Initiatives:

My first Head to the Hill experience was this year, where I witnessed firsthand the incredible courage and energy of NBTS’ brain tumor survivors and family advocates and their ability to capture (even captivate) the attention of member of congress and their staffers while campaigning for policy changes that will benefit the entire brain tumor community.

Amanda Bates, Administrator for Programs and Research:

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Researchers talk during the 2015 NBTS Scientific Summit

I was inspired at the 2015 National Brain Tumor Society Scientific Summit when hearing how only two years ago the focus of this annual meeting was to address the need for more collaboration in the brain tumor research field…and now, at this year’s Scientific Summit, results were shared from many new collaborations happening in the field, many led by NBTS.

Steven LaFond, Digital Communications Manager:

Dr. Adrienne Scheck (seen in the video below), told me that as a scientific researcher, it’s very rare to really get to know patients and see firsthand the direct connection between treatments and the community. By running her clinical trial, she’s now had direct interactions with neuro-oncologists and patients in the clinic and it has been extremely fulfilling. It made me think about the interactions I’m blessed to have with all aspects of the community and to find more ways for all of us to interact so everyone has a palpable sense of what’s at stake and what is being done to defeat this awful disease.


We’ve made consistent strides and the progress we’ve made this year couldn’t have been done without your support. Please consider a gift before the year is over. Together we can do this. It’s your fight, it’s our fight.

With best wishes for 2016,
Steven
  • logan607

    I just wanted to say that I’ve been through most/all of this blog and I’m comforted to know that so many brilliant and dedicated people are working to solve this issue. My wife was recently diagnosed after we gave birth to our first child and the news has been just devastating to us.

    I posted an open letter to the Vice President quoting some parts of your recent conference. I hope things can change in time to save my wife and all those that are afflicted with something as horrifying as a GBM.

    http://loganlo.com/2016/01/a-letter-to-joe-biden.html

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