Below are the “Top 10” most-read blogs and news stories from the NBTS website over the course of 2019. Included are recaps of the inspiring moments in the brain tumor community, promising updates on advances we’re making together, and powerful testimonials from patients and families impacted by brain tumors.
In June, the United States Senate passed the NBTS-championed, bipartisan resolution declaring July 17, 2019, as the first-ever Glioblastoma Awareness Day in the U.S. When the day arrived, the stories and experiences recounted on 7/17/19 reverberated across the nation. #GBMDay became a trending topic in the nation and the groundswell of awareness that was generated has served to establish a strong foundation for an annual commemoration that will continue to raise the collective consciousness in the U.S. about the urgent need to conquer and cure glioblastoma, and all brain tumors, once and for all.
NBTS-funded research, published in February, shows a significant survival advantage for patients receiving immunotherapy before surgery. NBTS also followed up a news story about this advance, with a profile of the researcher at the center of the discovery.
3. National Brain Tumor Society Invests in GBM AGILE, the World’s First Global Adaptive Trial for Glioblastoma Brain Cancer
In January, NBTS announced a partnership with the Global Coalition for Adaptive Research (GCAR), a nonprofit organization comprised of some of the world’s foremost clinical, translational, and basic science investigators. NBTS has provided GCAR with a $750,000 award to help launch and build patient awareness of the world’s first global “adaptive” clinical trial for brain cancer, GBM AGILE (Glioblastoma Adaptive Global Innovative Learning Environment). Then in May, NBTS announced a second-round of funding for GBM AGILE, together with our partners, StacheStrong. GBM AGILE is now enrolling patients at more than a dozen cancer centers across the United States.
In early March, we were excited to share information from a new Defeat GBM-funded research study that found a potential method to make radiation more effective when given to certain glioblastoma (GBM) patients.
Research funded through NBTS’s Defeat GBM Research Collaborative discovered that an enzyme that serves as a link between oncogenes and the lipids that make-up cells’ membranes may be an important new drug target to treat glioblastoma and other tumors.
During Childhood Cancer Awareness Month, Rebecca Connor shares the trials and tribulations confronting the diagnosis and loss of her 7-year-old son, Mac, and the family’s ongoing efforts to honor his memory and continue his legacy.
7. National Brain Tumor Society Applauds Medicare’s Coverage Decision for Tumor Treatment Field Therapy
On the heels of #GBMDay in July, the brain tumor community achieved an important advocacy victory. One of the few treatments approved to treat glioblastoma patients — a device known as Tumor Treatment Field Therapy (or TTFT) — had not previously been covered for patients receiving their health insurance through Medicare. Following the advocacy of NBTS, along with patients, physicians, and other brain tumor advocacy organizations, Medicare made a more favorable coverage decision for the TTFT device. This coverage determination will help patients access potentially life-extending treatment while reducing affordability as a barrier to glioblastoma care.
Top fundraiser from the Northwest Brain Tumor Walk, Vona Weiss, shared a moving personal narrative about her reason for participating in the NBTS event.
The shared experience of participating in online discussions with the brain tumor community offered Adam Hayden and Lisa O’Leary insight into the gaps between current vehicles that exist for those impacted by brain tumors to connect, share, and support each other. They came up with the idea to host a virtual platform where patients and loved ones could talk about the feelings and emotions that accompany any aspect of the brain tumor experience in a safe, welcoming environment, and the Brain Tumor Support Conversations partnership with NBTS was born.
Our annual advocacy event, Head to the Hill, reached new heights in 2019. This year, 321 advocates from 34 states mobilized on Capitol Hill and held 214 meetings with their senators, representatives, and congressional staffers.
Wishing you a happy and hopeful New Year.
Thank you for your continued readership!