Below are highlights of news and developments in the brain tumor advocacy and public policy, compiled by NBTS Research & Advocacy Manager, Kacey Troy Ribnik, and Director of Advocacy, Lainey Titus Samant:
Brain Tumor Awareness Month (BTAM) 2018 was a very busy, productive, and successful month for the NBTS public policy advocacy program, all our wonderful volunteer advocates from across the country, and, indeed the entire brain tumor community.
Congress passed the Childhood Cancer STAR Act by unanimous consent on May 22! NBTS has been championing this comprehensive, bipartisan childhood cancer legislation (it was one of our big “asks” earlier in the month at Head to the Hill – more below) since 2015, and we’re so excited it will now move to the President’s desk to be signed into law!
The STAR Act will help stimulate more effective pediatric brain tumor research and could lead to better treatments that extend life and improve patients’ quality of life. Thank you to all advocates who have been working tirelessly toward this moment – your actions will make a real difference for pediatric brain tumor patients and survivors! Take a few minutes to thank your Representative and your Senators for listening to their constituents by supporting the pediatric brain tumor community.
Over 250 advocates from 38 states and Washington, D.C. joined together on Capitol Hill to advocate for the brain tumor community on May 6-8, and many of you joined in from home to participate in our Action Day. Thank you! On Capitol Hill, advocates attended over 200 meetings with their members of Congress to advocate for the Childhood Cancer STAR Act, which Congress passed two weeks after our advocates were on the Hill (see above!), and for increased funding for medical research so that brain tumor researchers can continue their work toward finding cures.
And once again we were happy to welcome a number of different brain tumor organizations to join us on the Hill, including the CERN Foundation and the Society for Neuro-Oncology.
National Brain Tumor Society hosted a first-of-its-kind, standing-room-only Congressional Briefing on May 15 for members of Congress and their staff to inform them on the experience of living with a brain tumor, the quest to develop new and more effective treatments for patients, and how Congress can help foster future progress. Read a full report of this briefing here.
The event was hosted by Senator Lindsey Graham (SC), with co-host Congresswoman Barbara Comstock (VA), in cooperation with Congressman Jim Langevin (RI), and with honorary co-hosts Senator Ed Markey (MA) and Senator Susan Collins (ME).
May 2018 has been recognized as National Brain Tumor Awareness Month by the United States Senate! Senator Steve Daines (MT) drafted the resolution with NBTS’ support, and Senators Ed Markey (MA), Susan Collins (ME), and Chris Van Hollen (MD) joined the effort to officially designate this month as Brain Tumor Awareness Month. We are grateful for their support.
In addition to the federal resolution, volunteers from the brain tumor community across the country have asked their respective governors to officially proclaim May as Brain Tumor Awareness Month in their states. So far, proclamations have come in from several states, including Massachusetts (where a special ceremony was held at the State House and our Mass. advocates even brought the proclamation with them to Head to the Hill), Ohio, New Hampshire, Illinois, and Arizona. Even the City of Newton, MA — where NBTS is headquartered — got in on the action, marking May is BTAM in the city. Thank you to all our dedicated advocates for raising awareness in your home states across the country.
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