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Head to the Hill 2018: Brain Tumor Advocates Raising Their Voice

The weather report in D.C. threatened rain during this year’s Head to the Hill 2018. And yet, the weather held for over 200 advocates coming from 38 states and Washington, D.C.

Jen Sebor at the CERN Butterfly release.

Many of our advocates joined 457 teams and 350 brain tumor survivors on the May 6, Race for Hope DC. The 21st year of this race, which NBTS co-hosts with Accelerate Brain Cancer Cure, raised more than $1.7 million this year.

Continuing with the day, advocates were invited to the CERN Foundations Butterfly Release and brain tumor reception. The event celebrates Ependymoma Awareness Day, and releasing the monarchs into the sky symbolizes the hopes of a world without this and other types of brain tumors.

Before Tuesday’s meetings with our elected officials, we hosted a comprehensive training day featuring scientists, doctors, policy experts and guest speakers who provided advocates with the information and tips on how to use their personal stories to affect change.

Our asks were:

  • For the U.S. House of Representatives to vote on the Childhood Cancer STAR Act. And for the Senate, who already passed the bill earlier this year, to sign onto an appropriations letter to fund the programs in the bill once the House does pass the STAR Act.
  • To get support for an increase in medical research funding for the National Institute of Health (NIH), the National Cancer Institute (NCI), and the Department of Defense’s Peer Reviewed Cancer Research Program (while ensuring brain cancer and pediatric brain tumors are eligible topics for funding).

Among the important guests, we were privileged to have spoken with our advocates, were:

  • Mark Gilbert, MD, the Chief of the Neuro-Oncology Branch (NOB), a collaboration between the NIH and NCI, who gave an overview of the organization of the NOB and what work they are undertaking to further the field of brain tumor research.
  • Terri Armstrong, PhD, Senior Investigator at the NOB, gave context about current neuro-oncology research and encouraged advocates in their quest to keep research top of mind for our elected officials.
  • Laurie Richards, president of LR&A, joined us again this year and gave a spirited presentation on how to use your story effectively when asking Congress to support our agenda. Laurie is also an active brain tumor advocate, herself.
  • John Lee, Director, Policy Resolution Group of Bracewell, presented on the importance of government-funded brain tumor research. John has been very active with our cause and provided information that underscored the importance of what our advocates were doing for the brain tumor community.
Survivors at HTTH

Click to enlarge this survivor photo.

In the afternoon, the advocates were broken up into state teams to practice their personal stories and what asks we had for our elected officials – the choreography of a congressional meeting. The Arizona team also engaged in a live-roleplay with David Arons on our stage to give other advocates a sneak-peak of what to expect on Tuesday.

Our evening was spent memorizing facts, honing our personal stories, and resting up for the large day ahead of us.

Head to the Hill 2018: Lobbying Day

Sen. Chris Van Hollen (MD) meeting brain tumor advocates.

Tuesday morning, brought us clear skies on Capitol Hill. Assembled on the steps of Congress, the advocates posed for our 2018 picture on the steps of the Capitol, before heading over to a breakfast with some very special guests.

Senator Chris Van Hollen (D-MD) praised the efforts of our advocates for their tireless efforts to keep funding for the NIH and NCI, as well as their support for the Childhood Cancer STAR Act.

Nascar Driver and brain tumor survivor, Matt Tifft, sharing his story.

Next up was brain tumor survivor and NASCAR driver, Matt Tifft, who shared his personal story of how he learned of his diagnosis, his recovery, and how important Head to the Hill is, not only for him personally but for the work each and every one of those assembled were undertaking for the good of the entire brain tumor community.

Sen. Jack Reed (RI) with constituents.

Senator Jack Reed (D-RI) thanked everyone for their support of the STAR Act and encouraged them to keep up the pressure on his colleagues in the House and Senate. He was proud of standing with us and remained committed to brain tumor research.

Breakfast was swift for our advocates, as many had early morning meetings with their representatives and Senators. Within the span of nine hours, our advocates met with 126 unique House districts, and 76 Senate offices, bringing the total to 202! 

There is still work to be done, and we need your help in doing it. You can get your elected officials on board to support the STAR Act in the House, and to champion medical research funding. We encourage you to raise your voice to help us.

Together, we can remind Congress that brain tumors have no party, and it is with their help that we can find new treatments and a cure.

 

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