National Brain Tumor Society – Public Policy and Advocacy Update
March 2016
Vol. 5, No. 2
  • Head to the Hill Registration Growing: Sign Up Today
  • STAR Act Support Climbing Toward Committee Goal
  • Taking Action To Support Brain Tumor Research
  • Welcoming New Members To Our Advocacy Team
  • Dr. Robert M. Califf Confirmed As New FDA Commissioner
Head to the Hill Registration Growing: Sign Up Today
Great news advocates: Lots of you are registering for Head to the Hill 2016, our signature advocacy event in Washington in D.C. on May 2nd – 3rd, 2016. Already over 100 participants have signed up from 28 states – this is an awesome start!
If you have not signed up already, please do so right away. The registration deadline is April 4.
Head to the Hill is our community’s largest annual opportunity to bring our voices and our cause to policymakers in our nation’s capitol during a time when Congress is more focused on how to advance cancer research than ever before. For more information about how to register please go to:
STAR Act Support Climbing Toward Committee Goal
Last year, all of us as advocates successfully recruited initial support for the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act sponsored by Representatives Michael McCaul (R-TX) and Chris Van Hollen (D-MD) and Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV). As you know, the bills are especially important to advancing pediatric brain tumor research, and ultimately care, by enhancing the collection of biospecimens for research and by improving care models. The Act will also increase the level of expertise at the National Cancer Institute (NCI) in pediatric cancer research. Today, thanks to your advocacy, the STAR Act is poised to recruit enough co-sponsors to merit a milestone vote in the House of Representatives’ Energy and Commerce Committee. With more than 160 co-sponsors in the House of Representatives on a bi-partisan basis, the bill is ready to move! Please be on the lookout for an action alert asking you to urge additional support. 

Taking Action To Support Brain Tumor Research
Recently we blogged about the key role the Congressional appropriations process plays in securing federal funding for brain tumor research at the National Institutes of Health, and, to a lesser extent, through the Department of Defense. Now that Congress is working actively to develop appropriations bills it is important that we take action this month to urge Congress to support the programs most able to help advance brain tumor research. Again, please be on the lookout for an action alert soon. 

Welcoming New Members To Our Advocacy Team
We are pleased to let you know about some new members of our team that will take on the key responsibilities of working on behalf of, and managing, our Public Policy Advocacy program.

First, we want to announce some new additions to our volunteer State Lead Advocate Program. We welcome Kelly Burns, the new state lead advocate for Maine, and we also are pleased and grateful that Lainey Titus Samant and Jennifer Helfer, both former staff of NBTS, have joined forces to become co-state lead advocates for Massachusetts.
At the staff level, we are very excited to share the news that Lisa Peabody has joined our team as a Public Policy and Advocacy Associate. Lisa has been a volunteer advocate with us for years and is a former caregiver and parent of a pediatric brain tumor patient. Lisa brings a truly inspiring passion for our advocacy work and is equally a pleasure to work with. If you don’t know her already, you’ll get to meet her at Head to the Hill, if not before. Lisa will be working with us on a variety of advocacy activities and initiatives.
We are also pleased to let you know that Kacey Troy, Research Program Manager at NBTS, will also be working with you, our advocates, to help make advocacy a great volunteer experience and to mobilize our forces to achieve policy change.
Dr. Robert M. Califf Confirmed As New FDA Commissioner
On Wednesday, February 24, 2016, Dr. Robert M. Califf, formerly of Duke University, was officially confirmed as the new Commissioner of the U.S. Food and Drug Administration (FDA). The FDA had been operating without a permanent commissioner since Dr. Margaret Hamburg left the post in March of 2015. Read our full statement on Dr. Califf’s confirmation here.

Again, if you haven’t done so please sign up for Head to the Hill today. We are looking forward to seeing you in May.
Thanks for your support,
David Arons, JD                      Kacey Troy                             Lisa Peabody

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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