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BTAM Kick-Off Recap: Brain Tumor Community Takes Over Washington, D.C

Guest Author: Tom Halkin & Steven LaFond

Rain didn’t dampen the kick-off to Brain Tumor Awareness Month 2016, as the global brain tumor community united to start May with a bang.

Race For Hope – D.C. (May 1)

When you’ve battled a brain tumor yourself, or cared for a loved-one who has suffered a brain tumor, a little rain is no match for your spirit and determination. So said nearly 10,000 members of the brain tumor community who kicked-off Brain Tumor Awareness ACTION Month 2016 by gathering at Freedom Plaza in our nation’s capital for the Race for Hope – D.C., the largest single-day fundraiser in the U.S. for the brain tumor community, on Sunday, May 1.

The Biden family joins Race for Hope participants in a moment of silence.

Despite pouring rain and cooler than average temperatures, the streets traversing some of America’s most important landmarks were flooded with brain tumor patients, survivors, caregivers, family members and friends, for the annual 5k run/walk. This year’s event, which once again eclipsed the $2 million mark, was exceptionally special as surprise guests – the family of Beau Biden, including Vice President Biden, himself – motivated and thanked the crowd for all they are doing on behalf of the brain tumor community following their acceptance of the Triumph of the Spirit Award.

Money raised from this event will help both NBTS and our friends at Accelerate Brain Cancer Cure (ABC2) fund research to help find better treatment and cures.

Head to the Hill Training & Ependymoma Awareness Day (May 2)

CERN Butterfly Release

While the rain continued Sunday night into Monday, 300 volunteer brain tumor advocates from 39 states (and guests from the U.K. and Puerto Rico!) piled into a conference room to learn about effective congressional advocacy and the legislative priorities of the brain tumor community as part of Head to the Hill 2016 training. The group also heard from a congressional staffer and Dr. Mark Gilbert, Chief of the National Cancer Institute’s Neuro-Oncology Branch.

Signs welcome advocates to Head to the Hill Training Day

As training broke at the end of the day Monday, so did the rain. In an amazing sequence, the skies cleared for just enough time to recognize Ependymoma Awareness Day with our partners from the Collaborative Ependymoma Research Network (CERN). This emotional event featured several poignant speeches as well as an awe-inspiring butterfly release.

Head to the Hill Advocacy Day – Congressional Visits (May 3)

Once again our dedicated volunteers and participants were greeted with showers on Tuesday morning. Undeterred, 304 brain tumor advocates – a record number! – made the trek up to Capitol Hill to meet with their members of Congress and educate them – using the knowledge and skills honed during the previous day’s training – on the policy priorities that the brain tumor community needs support on.
> Read more about the three asks

Remarkably, the rain stopped long enough for almost all of our time on the Hill, keeping us dry as we held more than 220 meetings with congressional offices and staffers.

Chris Olszak

Sporting NBTS Head to the Hill t-shirts, our advocates were a prominent and inescapable sight on Capitol Hill. Many state groups have already reported back that complete strangers had stopped to note how powerful a presence our group was on the Hill, along with encouragements to keep up the fight.

While we’re still collecting and analyzing feedback, as well as following-up with offices that were met with, initial reports are highly positive and encouraging.

  • “Today was a good day on the Hill,” posted North Carolina advocate Chris Olszak. “The rain held off for us to finish our meetings. It was a long day and I fell behind in posting near real-time, because, well, I was busy racking up 14K steps between 5 congressional office buildings to cover 6 meetings with legislative staff and about as many more drop-ins on remaining offices. This second year was better than the first. This is getting easier and less daunting. And the connections to a community so committed to better outcomes make it all worthwhile. So many great people. Brain tumors are in jeopardy. They’re up against a force that will not stop!”
  • “Head to the Hill is a chance to really make an impact for the brain tumor community. Last year, our meetings during Head to the Hill helped ensure that pediatric brain tumors were once again made an area eligible for research under the Department of Defense’s Congressionally Directed Medical Research Program’s Peer Review Cancer Research Program,” said Matt Hanson, an advocate from Seattle, Washington. “We also added our voices to the collective effort of medical research advocates asking for increases in funding at NIH, and were happy to see the biggest increase in funding for that agency in 12 years come to fruition in the FY2016 budget deal. We believe, with an even bigger presence this year, we can continue to make an impact for the nearly 700,000 Americans currently living with a brain tumor and all of those who will be diagnosed in the future.”
  • “What an incredible day of advocating for my cause on Capitol Hill!” tweeted Pennsylvania advocate Beth Finn. “I feel so inspired, empowered, and happy!
  • “Intense, humbling, moving experience at #head2hill,” added Maryland advocate Liz Cramer. “Was truly my privilege to learn & advocate with everyone. THANK YOU.”
  • “Another year, and another inspiring, emotional, and successful #head2hill event,” concluded Massachusetts advocate Erica Robinson.
Beth Finn sharing a moment with a butterfly.

In addition to our volunteer advocates on the Hill, nearly 100 more brain tumor advocates who were not able to attend in person took part in the parallel Congressional Action/Call-In Day by emailing, calling, and tweeting their members of Congress on Tuesday.

Continuing the Dialogue: Accelerating Anticancer Agent Development & Validation Workshop (May 4)

The day after Head to the Hill, NBTS CEO David Arons participated in the Accelerating Anticancer Agent Development & Validation Workshop just outside the D.C. city limits in Bethesda, Maryland. David sat on a panel with leading brain tumor researchers to discuss brain tumor drug development. The workshop is held in collaboration with the U.S. Food and Drug Administration (FDA) and designed specifically to help participants understand and negotiate the drug development and FDA approval process so that effective new cancer treatments can reach patients more quickly.

BTAM Goes Global

Niagara Falls lights up to recognize BTAM

Traditionally, Canada and the U.K. have hosted their national Brain Tumor Awareness Months in October and March, respectively. This year we are thrilled that, because of the work by our frequent collaborators at the Brain Tumour Foundation of Canada, North America is now aligned as BTFC officially moved their awareness month to May this year.

To symbolize this great partnership, BTFC was able to get Niagara Falls – an international landmark shared by both the U.S. and Canada – to light up orange in support of Brain Tumor Awareness Month on the continent (orange is part of both the NBTS and BTFC logos…Gray wouldn’t have showed that well!)

Further, our friends from The Brain Tumour Charity (U.K.) sent two staffers to join us this year for Head to the Hill.

It’s been great to work with members of the global brain tumor community so far to increase the impact of Brain Tumor Awareness ACTION Month. What an opening first week, to say the least…and we still have three more weeks to go! As a reminder, join us all month as we take action with the rest of the brain tumor community.

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