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This Is Your House: Head to the Hill 2019

We declared Brain Tumor Awareness Month 2019 as Brain Tumor ACTION Month (BTAM). As part of our effort to not only raise awareness, but to drive action that results in positive change for the brain tumor community, we themed the first week of BTAM as “Public Policy Advocacy Week” as we held our annual Head to the Hill advocacy day on Capitol Hill with a simultaneous, virtual “Congressional Action Day.” Below is a recap of Public Policy Advocacy week in words, pictures, video, and contemporaneous social media posts. It was the perfect start to Brain Tumor Awareness ACTION Month 2019.

Head to the Hill is more than the largest advocacy day for the brain tumor community. It’s the event that brings together hundreds of brain tumor patients, survivors, families, doctors, and supporters to Washington, D.C. to support not only a transformative legislative agenda, but one another.  

Serious illness often leaves patients and their care partners feeling helpless, and the unique experience of brain tumors can be isolating. Locking arms with advocates at Head to the Hill empowers us to make meaningful differences to benefit the community, and the strength we gain through being around others reminds us we are not alone.

Attribution: Adam Hayden, Indiana Advocate

This year, 321 advocates from 34 states mobilized on Capitol Hill to present Congress with three asks:

  • Increase appropriations for medical research by funding the National Institutes of Health ($41.6 billion for FY20), and the National Cancer Institute ($6.522 billion for FY20).
  • Continue to fund the Peer Reviewed Cancer Research Program of the Department of Defense ($120 million for FY20, with brain cancer and pediatric brain tumors included as diseases eligible for research funding), and honor their commitment to the Childhood Cancer STAR Act  by continuing to fund it ($30 million in FY20).
  • Support the Palliative Care and Hospice Education and Training Act (PCHETA, H.R. 647) to improve the quality and availability of palliative care for all patients.
The Children’s Fun Run at the 22nd Annual Race for Hope DC


Before the meetings began, many of our advocates arrived over the weekend to attend the 22nd Annual Race for Hope – DC. A driving rain did nothing to dampen the spirits of the event, as thousands of survivors and their families participated in the event, raising $1.79 million and counting.

After drying off, our newly arrived advocates attended the Head to the Hill Welcome Reception and Ependymoma Awareness Day held at the offices of Bracewell, LLP. Our partners at the CERN Foundation made this incredible video of the event:

Training Day

Monday morning brought the sun, and with it, an intensive day of training, presentations, and learning. We were honored to have speakers from, CERN, SNO, Making Headway Foundation, Head for the Cure, and Henry Ford Health System, many of whom were there as advocates themselves.

David Arons, CEO of NBTS

Kacey Troy began the day with a series of presentations about the current legislative agenda, how to hone your introduction for maximum effect, and led a practice session on personal stories before introducing David Arons, who brought a message of optimism.

Remember, Congress is YOUR house.

Attribution: CEO David Arons

David was followed by Sarah Durham, the Chairperson of the NBTS Board of Directors, who shared her personal story and encouraged the advocates to continue their meaningful work. Steven LaFond gave a spirited presentation on using social media to boost the signal of our legislative agenda and how it can be leveraged to continue the discussion with elected officials with positive reinforcement and direct asks.

David introduces Drs. Gilbert, Armstrong, and Nduom.

Doctors Mark Gilbert, Terri Armstrong, and Edjah Nduom, gave a fantastic panel discussion about the work the institutes of the NIH are doing for patients, as well as stressing the importance of patients finding neurosurgeons and doctors who specialize in neuro-oncology.

Advocates Liz Salmi, Lisa O’Leary and Adam Hayden presented on the importance of palliative care in brain tumor treatments, citing examples from their own lives. These experiences and facts tied in directly with our legislative agenda for the event, and members of the audience shared some of their own experiences.

We took a brief break in the day’s agenda to participate in the CERN Butterfly release, before returning to the conference room where our advocates practiced for their congressional meetings, weaving their personal stories with our legislative asks. John Lee of Bracewell’s Policy Resolution group joined Lainey Titus Samant on our medical research funding training.

The advocates spent the remaining time in their state groups, practicing the cadence of their talking points and learning more about one another.

At day’s end, we broke for dinner and prepared for the big morning ahead.

Head to the Hill

Our advocates, wearing their emerald green Head to the Hill t-shirts, were an impressive sight as they held 214 meetings with their senators, representatives, and congressional staffers. Optics aside, thanks to a rigorous training day, each of our advocates was able to use their personal stories as a driving narrative to persuade elected officials to pass legislation that will improve the lives of over 700,000 patients and their loved ones, and patient-focused research that will allow us to conquer and cure brain tumors once and for all.

There isn’t anywhere else I can spend three days and have such a large (policy) impact on a national level. Advocating for increased funding, research, and treatment is imperative to improving the lives of those impacted by brain cancer and brain tumors. Building community and finding strength in others is what gives me the power to keep fighting. I will be back year after year and will continue using my story and my voice, for my sister, for myself, and for everyone whose path is yet to cross that of a brain tumor.

Attribution: Janelle Shoemake, Minnesota Advocate
Senator Chris Murphy (D-CT)

At lunch, we were honored that Senator Chris Murphy of Connecticut addressed the advocates, praising their diligent work and pledging his support for the issues they were presenting. Meal finished and spirits high, the advocates continued to actively lobby Congress until the last meeting at 5 PM.

While these face-to-face meetings took place, hundreds of brain tumor advocates from around the country called, emailed, and tweeted their representatives in Congress to get them to support our legislative agenda. As the evening began, advocates exchanged tearful goodbyes with one another, and the promises to see one another next year.

Head to the Hill may have concluded on Tuesday, but your help is still needed. Become an advocate, sign up to take part in our Action Alerts, and learn how you can use your story to affect substantial change on behalf of the brain tumor community. We need you.

Our 2019 Survivor Photo.

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