News & Blog

Public Policy and Brain Tumor Advocacy Updates From August 2018

Below are highlights of news and developments in the brain tumor advocacy and public policy, compiled by NBTS Research & Advocacy Manager, Kacey Troy Ribnik:


National Brain Tumor Society Honors Senator John McCain

We were profoundly saddened to learn of the passing of Senator John McCain following a year of treatment for glioblastoma. His loss further highlights the major unmet medical need glioblastoma presents and should be a clarion call for more support of efforts dedicated to tackling this awful disease. Continue reading our full statement here.

Funding Medical Research: Appropriations for the NIH and the STAR Act

Congress returned from August Recess on September 4th and have begun final discussions regarding the appropriations of funds for the federal government for Fiscal Year 2019 (FY19), which begins on October 1, 2018. View our web training on Medical Research funding to learn about Congress’ process for approving a spending bill for the next fiscal year, how this affects the brain tumor community, and why it is so important that we advocate for this funding each and every year.

Of note this year, is the added importance of advocating for full funding of the recently-passed Childhood Cancer STAR Act, which NBTS, together with all of YOU, our advocates, helped champion. When Congress passed the Childhood Cancer STAR Act earlier this year, it authorized up to $30 million to fund the law each year for the next five years. Now, we must ask Congress to in fact appropriate that funding, as authorized, in the FY19 budget. The Senate has already included language that directs the NIH to fully implement the programs of the STAR Act, as well provided guidance to the CDC to implement its parts of the bill, in its spending bill. We will now ask the House of Representatives to adopt the Senate’s language in the final spending bill. The National Institutes of Health (NIH) and National Cancer Institute (NCI) are already working with the community, including NBTS, on the implementation of STAR, so it is imperative that we see funding allocated for these programs in FY19.

Take action on the following topics Congress is discussing this month by clicking on each link below:

  1. Support medical research funding in FY19,
  2. Include pediatric brain tumors and brain cancer as eligible topics of research funding through the Department of Defense’s cancer research program in FY19, and
  3. Appropriate funds for the programs within the Childhood Cancer STAR Act for FY19.

September is Childhood Cancer Awareness Month

National Brain Tumor Society is joining with the larger cancer community to support pediatric cancer patients and their families this September during Childhood Cancer Awareness Month (CCAM). Follow along on our website, blog, YouTube channel, Facebook and Twitter as we share stories and work to make a difference for all those impacted by pediatric cancer.

NBTS will be participating in a number of events in Washington, D.C. to honor our most vulnerable patients this month, including CureFest for Childhood Cancer on September 16-17 at the National Mall. Stop by our table if you’re attending the event!

Also, the Alliance for Childhood Cancer, of which NBTS is a member, is calling for submissions to their annual Childhood Cancer Art Exhibit. This year’s theme is “A Moment in Time.” Please see this flyer for full details. The deadline to submit your child’s artwork is Friday, September 7.

Fall Events: Rally for Medical Research and the Biden Cancer Summit

If you are in the Boston area, please save the date to attend a community viewing of the Biden Cancer Summit on September 21 in our Newton, MA office. Click here to watch a short video about these community summits, and check your inbox for an invitation with more details!

The Rally for Medical Research Capitol Hill Day calls on our nation’s policymakers to make funding for National Institutes of Health (NIH) a national priority and raises awareness about the importance of continued investment in medical research that leads to more progress in curing diseases, including brain tumors. If you are in the DC area, please consider representing the National Brain Tumor Society at this two-day event to share the challenges of a brain tumor diagnosis with your elected officials and urge him/her to invest in the NIH. Please email advocacy@braintumor.org for more information and to register for this event.


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