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National Brain Tumor Society

National Brain Tumor Society Public Policy and Advocacy Update
Vol. 4, No. 5

May 2014

  • Advocates Make a Difference at Head to the Hill 2014
  • Request: Lend Your Story To Help Advance Policy
  • Brain Tumor Awareness Month and Beyond: Opportunities for Engagement
Advocates Make a Difference at Head to the Hill 2014
Once again, congratulations and ‘thank you’ to all of the advocates who participated in this year’s Head to the Hill advocacy event in Washington, D.C. Over 135 of you joined us from 30 different states to urge Congress to strengthen national policies to advance brain tumor research and improve access to essential therapies. We also thank all those who took action through the National Call-in day, as well. Your phone calls to elected officials urging them to increase funding for medical research that is essential in the fight against brain tumors, helped amplify our voices on the Hill.

The results of your advocacy were clear--six members of the U.S. House of Representatives promptly signed up to co-sponsor HR 2607, the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, and eleven members signed up to co-sponsor HR 1801, the Cancer Drug Coverage Parity Act. To put that in perspective, only four new co-sponsors had signed-on to HR 1801 in the previous five months total; our brain tumor advocates are making a difference!

To view pictures from Head to the Hill 2014, visit our Facebook photo album

Request: Lend Your Story to Help Advance Policy
There is one sure fire way to get the attention of elected officials and persuade them to advance policies that help the brain tumor community: Tell your story. We can help you do it. Pick from any or all of these issues and write to us at advocacy@braintumor.org if you think you have a personal story to share.

Medical Research Funding: If you have a story that underscores the benefits of medical research on brain tumors.

Oral Chemotherapy Parity: If you or someone you know has faced the challenge of affording brain tumor medicines, including Temodar.

Pediatric Brain Tumor Research: If you have a story that would help make the case for why we need new, effective drugs for pediatric brain tumor patients.

We’ll carry these powerful stories with us in our ongoing engagement with government officials and Members of Congress.

Brain Tumor Awareness Month and Beyond: Opportunities for Engagement
As May comes to a close, we want to thank you for taking action through events, advocacy, social media activities, and helping others in the brain tumor community find information and support. Please continue to visit our website to find volunteer opportunities, or email advocacy@braintumor.org to connect with us.

As always, thank you for your support. Together, we are making a difference in the fight against brain tumors.

David F. Arons
Senior 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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