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May 2015: Brain Tumor Awareness Month brought unprecedented action

It feels like the biggest [Brain Tumor] Awareness Month Ever!

The above quote was emailed to the National Brain Tumor Society staff in the waning days of Brain Tumor Awareness Month 2015…and we couldn’t agree more! What a month May was for creating significant momentum for our cause.

Between advocacy activities, fundraising events, and awareness efforts, few around the halls of NBTS headquarters could remember a more productive month in the fight against brain tumors.

Below are some of the highlights:

Head to the Hill Draws Record Crowds & Momentum

Head to the Hill 2015

Head to the Hill 2015 was our biggest advocacy day yet. More than 200 brain tumor advocates from 38 states participated in 193 separate meetings with members of Congress. This record attendance translated into a tangible increase in impact coming out of Head to the Hill:

  • The same day our advocates descended on the Capitol, the Senate Health, Education, Labor, and Pensions (HELP) Committee held a hearing on precision medicine. Committee member Senator Susan Collins of Maine used her allotted time during the hearing to speak about the brain tumor advocates she had met just that morning, and what more funding for research would mean for them.
  • One of our asks at Head to the Hill was for congress to make pediatric brain tumors an eligible topic for funding under the Defense Department’s (DoD) Peer Review Cancer Research Program. Following our Hill visits, 35 members of the House of Representatives came together and signed a letter championed by Representatives McCaul (R-TX), Langevin (D-RI) and Van Hollen (D-MD) urging the House Department of Defense Appropriations Subcommittee to include pediatric brain tumors as an eligible funding topic in the Peer Review Cancer Research Program. And the Subcommittee took notice and has included Pediatric Brain Tumors back into the Appropriations bill for FY 2016! The Committee has allocated $20 million overall in FY 2016 for the Peer Review Cancer Research Program, so pediatric brain tumor researchers will have a chance to compete for those dollars in grant awards. Thanks in large part to the dedicated efforts of our volunteer advocates, we now have great momentum on our side to ensure pediatric brain tumors are confirmed as an eligible research topic for the Peer Review Cancer Research Program in FY 2016.
  • Later in the month, Representative Joe Kennedy of Massachusetts took to the hallowed ground on the floor of the House of Representatives and delivered a speech about the importance of brain tumor awareness month and fighting for the needs of the brain tumor community.

The Grey Soirée Raises More Than $1 Million

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2015 Grey Soiree

Shortly after Head to the Hill, the National Brain Tumor Society had the tremendous opportunity to co-host a one-of-a-kind event at the Virginia home of two dedicated brain tumor advocates, research champions, and philanthropists, Ashley and Alan Dabbiere.

Attended by 500 guests, including brain tumor research pioneers as well as leading philanthropists, The Grey Soirée featured entertainment from nine-time Grammy Award winning musician Sheryl Crow, with food and wine pairings provided by some of the area’s top chefs. More importantly, the event raised more than $1 million for the National Brain Tumor Society’s core programs and our Oligodendroglioma Research Fund.

Walks, Races, & Rides in May Raise Nearly $3.5 Million Combined


During May, nearly 15,000 walkers, racers, and riders from across the country took to the streets to raise much needed awareness and funds for brain tumor research and policy efforts. Our Bay Area Brain Tumor Walk, Race for Hope DC (co-hosted with ABC2), Boston Brain Tumor Ride, Team Billy Ride and Walk for Research, and San Diego Brain Tumor Walk combined to raise nearly $3.5 million dollars for high impact research projects and public policy initiatives.

Thank you to all of our event committees, team captains participants, volunteers, and sponsors for making May a successful month and helping provide the resources necessary to continue the fight and create even greater progress!

It’s yOUR Fight hashtag, #ItsyOURFight takes a life of its own

Part of our efforts of the month concerned the community itself. While NBTS has resources and knowledge for the community, we believe that there are experiences and resources that survivors and caregivers could share with the newly diagnosed. We started the hashtag #ItsyOURFight as a means to collect this information and create infosnaps and links to resources to empower the community as a whole. However, the tag’s purpose broadened, serving as a lightning rod for gripping stories and calls to action. We created this Storify that showcases only a third of original messages out there.

The hashtag is still being used as a rallying cry for the community, and we’re grateful to see it take flight.

NPR Sponsorship & Hill Op-Ed Raises Awareness in Capitol

To leverage the momentum created by Head to the Hill and continue to get our cause out in front of policymakers in D.C., during the last two weeks of Brain Tumor Awareness Month National Brain Tumor Society teamed up with WAMU 88.5 FM – the National Public Radio (NPR) affiliate of the Washington, D.C. and Greater Capitol region – to sponsor a number of segments from May 18th – 31st. WAMU is the station of choice for policymakers in our nation’s capitol.


To reinforce the NPR radio spots, our CEO, Sally Davis, also published an op-ed in the leading policy and Capitol Hill news outlet The Hill. The op-ed reiterated our legislative agenda for 2015 and told congressional offices what they could do to help accelerate progress for the brain tumor cause. And Congress did, indeed, take notice. Shortly after the op-ed was published Friday morning, the U.S. House of Representative’s Energy and Commence Committee re-published the article on their website for the 21st Century Cures Initiative.

Finally, we ended the month with a number of our Research and Scientific Operations staff heading out to Chicago to attend the 2015 American Society of Clinical Oncology Annual Meeting, one of the most important cancer research meetings of the year. There our staff is able to learn about the latest research on emerging new treatments and get updates on some of the most encouraging clinical trials taking place in the brain tumor space. We’ll have a full recap on on this blog later this week, but in the meantime check out this great round-up post from our Associate Director of Scientific Operations, Dr. Jennifer Helfer.

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