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National Brain Tumor Society

May 2013 Public Policy Update: Watching the Advocacy Garden Grow

This month, we tell you about all the ways that, with your hard work and dedication, we are watching our advocacy efforts grow. From a successful Head to the Hill to new partnerships, advocacy is a powerful force for fighting brain tumors through public policy. Read the full update on our website.

  • Head to the Hill 2013 is a Success!
  • The Federal Budget: Advocacy for Brain Tumor Research Dollars Marches On
  • National Brain Tumor Society Joins Alliance for Childhood Cancer
  • Advocate of the Month Karen Armentani

Head to the Hill 2013 is a Success!

We would like to send a big thank you to everyone who participated in Head to the Hill 2013! Each of you made a real difference in the fight against brain tumors by telling your stories and advocating for two critical issues - NIH funding and oral chemotherapy parity. With 126 meetings and 29 states represented, this year's advocacy day was the most successful yet. As of today, there are 11 new cosponsors supporting the legislation that would ensure affordable access to oral chemotherapy treatments, including temozolozmide (brand name: Temodar), the standard of care treatment for many types of brain tumors. We expect this number to continue to rise as advocates continue to follow up from their meetings earlier this month. Thank you for fighting brain tumors through public policy on Capitol Hill with us.

The Federal Budget: Advocacy for Brain Tumor Research Dollars Marches On

The House and Senate are now drafting spending bills for Fiscal Year 2014, which begins on October 1. While major fiscal policy differences exist about how the federal budget deficit should be reduced, there continues to be strong bipartisan support for at least maintaining funding for the National Institutes of Health (NIH), the largest funder of brain tumor research in the U.S. But let’s be clear, maintaining current funding for NIH, while better than nothing, is still not enough to keep pace with the needs of research or to generate the discoveries needed to fight brain tumors. Moreover, if you take into account the sequestration cut of $1.6 billion from NIH, plus the cost of inflation, NIH and the National Cancer Institute would still experience a decrease in financial support. 

What’s needed now is persistent and personal advocacy.  We need to keep making the case to policymakers that it is their job to support the discovery of potential cures by ensuring funding for NIH is a top priority. 

National Brain Tumor Society Joins Alliance for Childhood Cancer

We are pleased to let you know that we are now an organizational member of the Alliance for Childhood Cancer, a national coalition of about 20 cancer patient and research groups focused on ending childhood cancer and improving both treatments and health care for pediatric cancer patients. Our participation in the Alliance is a continuing expression of the National Brain Tumor Society’s commitment to finding new therapies and ultimately a cure for pediatric brain tumors.  We look forward to working with Alliance members to advocate for mutual policy goals.

Advocate of the Month Karen Armentani

This month, we honor one of our most dedicated and enthusiastic brain tumor advocates New Jersey Lead Advocate and brain tumor survivor Karen Armentani. Karen was a longtime supporter of the National Brain Tumor Society before joining the public policy and advocacy efforts, as a key member of the planning committee dedicated to the Race for Hope - Philadelphia. She has helped grow the Race, raise money, and support survivors through her dedication to the survivor tent at the event. Since joining us at Head to the Hill 2012, Karen has been telling her story, recruiting new advocates, leading existing efforts, and making change for brain tumor patients everywhere. Thank you, Karen!

And thanks to all of you for your continued advocacy for the brain tumor community.

David F. Arons, JD
Director of Public Policy


National Brain Tumor Society is fiercely committed to finding better treatments, and ultimately a cure, for people living with a brain tumor today and those who will be diagnosed tomorrow. This means effecting change in the system at all levels. It's time to build on progress and transform tomorrow today.

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