National Brain Tumor Society - Public Policy and Advocacy Update
January 2016
Vol. 5, No. 1

  • White House Cancer Moonshot Task Force Announced
  • 2016 Legislative Agenda
  • Save the Date! Head to the Hill 2016
  • Thank Your Members of Congress!
  • Public Policy & Advocacy Staff Transitions

White House Cancer Moonshot Task Force Announced
As we have mentioned in the past, Vice President Joseph R. Biden, Jr. announced his desire for a cancer “moonshot” during his remaining time in office. A formal initiative was pledged during President Barack Obama’s State of the Union Address earlier in January 2016, in which the president affirmed that Biden would lead such an effort. Today, President Obama issued an Executive Memorandum establishing a “White House Cancer Moonshot Task Force,” to be headed officially by the vice president, providing further clarity to this nascent initiative. 

National Brain Tumor Society congratulates the administration for the launch of the Task Force, and for the urgency with which it was formed. We are particularly encouraged by the section of the memorandum that calls for continued engagement with diverse stakeholders in the cancer research community, including patient groups and nonprofits, such as NBTS. Indeed, NBTS has been honored and privileged to already meet with, and subsequently submit detailed recommendations to, the vice president’s office. As the largest and leading nonprofit patient advocacy and research funding organization in the field of brain tumors/brain cancer, the type of cancer which took the vice president’s son, Beau, we believe we have inimitable insight into specific steps that can be taken that will not only advance brain cancer research – an areas of high unmet, yet urgent, medial need – but which would also benefit the entire oncology field. 

Read our full statement here and stay tuned for more updates in the coming months.

2016 Legislative Agenda
We are pleased to announce our Legislative Agenda for 2016. Through this agenda, we are advancing brain tumor research, facilitating the development of treatments, and fighting for a better quality of life for patients. We hope that you will join us in fighting for these policy changes for the brain tumor community in 2016.

Save the Date! Head to the Hill 2016
National Brain Tumor Society invites you to join us on May 2nd & 3rd for our inspiring signature advocacy event, Head to the Hill 2016. Don’t miss out on the chance to join other patients, caregivers, family, friends, researchers and medical providers at this moving event to ensure that policymakers on Capitol Hill hear the voice of the brain tumor community!

No previous experience is necessary. All you need to participate is a passion for fighting brain tumors and the most powerful tool - your voice. We look forward to having you join us to help policymakers better understand the needs of our community and advocate for the policies that are essential to ensuring availability of treatments, increased scientific research, and the discovery of a cure.

Look for registration to open in February. For now, mark your calendars! If you have any questions, please contact us at advocacy@braintumor.org or 617.231.6310.

Thank Your Members of Congress!
At the end of the year, we shared the exciting news that Congress has passed a fiscal year 2016 federal budget that included an increase in vital medical research funding through the National Institutes of Health (NIH) and the National Cancer Institute (NCI), as well as including pediatric brain tumors as an eligible topic for funding in the Department of Defense’s (DOD) Congressionally Directed Medical Research Program's Peer Review Cancer Research Program. Without a doubt, this would not have happened without your efforts, and the efforts of the entire cancer community. You reached out and advocated with your members of Congress, and your voices were heard!

Now, we’re asking for you to contact your members of Congress again, this time to thank them for making an investment in medical research. It will only take a minute to write a note and make sure they know we will be here not only to ask for their support, but also to express our thanks when they provide it. Thank your members of Congress now!

Public Policy & Advocacy Staff Transitions
Lainey Titus Samant, Director of Public Policy and Advocacy, will be leaving her position in early February to stay at home full-time with her young daughter. While we will miss having Lainey in her current role, she will remain actively engaged in the community, both as a former caregiver and as the Co-State Lead Advocate from Massachusetts. 

According to Lainey, “It has been an honor and privilege to work with so many of you to find better treatments and a cure for brain tumors, and I will be forever changed by all of you and your stories. I know that you will continue to make an impact in the coming years through public policy advocacy, and I look forward to joining you in the fight.”

Thank you again for all your support and advocacy!

David F. Arons, JD

Chief Executive Officer

darons@braintumor.org

Lainey Titus Samant

Director of Public Policy 

lsamant@braintumor.org

 

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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