National Brain Tumor Society

January 2013 Public Policy Update: New Year, New Congress, New Opportunities for Action

  • Save the Date: Head to the Hill 2013
  • Welcoming A New Congress
  • Connecticut Advocates Bring the Message Home
  • NIH Still Needs Our Help
  • Advocate of the Month: Jolee Rosenkranz

For much more on each of these stories, please visit the full update on our website.

Save the Date: Head to the Hill 2013

Please mark your calendars! Head to the Hill 2013 will take place on May 6 and 7 this year. We will start with a half-day policy and advocacy training on Monday, followed by a day of Congressional meetings on Tuesday. Last year was such an inspirational and energizing event, and we have plans to top it this year! Never advocated in DC before? Don’t worry - many participants have little or no experience. We’ll be sure to provide you with all the training you need to be comfortable, knowledgeable, and effective. In fact, if you would like to get in touch with a participant from last year to get their perspective, just let us know. We would be happy to make a connection for you. We hope to see you there! 

Welcoming A New Congress

Just a few weeks ago, members of the 113th Congress were sworn in for a new session. Some are returning Members who have heard from brain tumor advocates before and close to 100 are brand new who may not know what they can do to fight brain tumors. We must continue to engage returning Members, building on the momentum we have worked to create, and we must also introduce our community to the new offices, identifying new champions to help us strengthen research, advance therapies, and improve health care in 2013. We have a lot of work to do this year to tell our stories and advocate for the needs of brain tumor patients and families. We look forward to working together with you!

Connecticut Advocates Bring the Message Home

Lauren, Stephanie, and Len Farber are three incredible advocates who have stood up time and again to be sure that Members of Congress know that we need them to support the brain tumor community through public policy. This month, they brought the message to their home district. Along with National Brain Tumor Society staff, the Farbers met with Congresswoman Rosa DeLauro and her staff in her district office in New Haven, CT to talk about the importance of protecting brain tumor research funding from the National Institutes of Health in the current budget negotiations and ensuring access to affordable oral chemotherapy treatments. Congresswoman DeLauro committed to fight with us and to raise awareness of and organize support for these priorities among her colleagues. The Congresswoman is the Ranking Member on the subcommittee responsible for health issues on the House Appropriations Committee. Due to her position, her support is very important for our work protect research funding.

If you would like to schedule an in-district meeting with your Members of Congress, just let us know. We are here to help.

NIH Still Needs Our Help

As we mentioned in last month’s update, the budget negotiations continue. The National Institutes of Health, the largest funder of brain tumor research in the country, is still in danger of further cuts, whether through sequestration or further cuts in a deal reached to avoid sequestration. We cannot let up! There has been a great response from the brain tumor advocates  taking action online and following up with a phone call to the offices of their Members of Congress. If you haven’t yet written to your legislators, will you do so right now? And if you have, thank you! Will you now get 5 of your friends to do the same? Just post the link on your Facebook and Twitter pages, or write a quick email and tell them why this is so important to you. Chances are, it’ll be important to them too.

Advocate of the Month: Jolee Rosenkranz

This month, we would like to introduce you to our Advocate of the Month and Illinois State Lead - Jolee Rosenkranz. Jolee first became a brain tumor advocate with the National Brain Tumor Society when she joined us for Head to the Hill in 2012. She spoke with passion about her family’s experience losing a close friend to a brain tumor and asked her Members of Congress for their support.

Learn more here about how Jolee brought our message to her Congressional representatives during their in-district events and used her annual holiday party to recruit new voices to the brain tumor advocacy effort. Thank you, Jolee, for all you are doing to advocate for the brain tumor community! 

Thank you all for your continued advocacy. 

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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