National Brain Tumor Society – Public Policy and Advocacy Update
Vol. 3 No. 1
January 23, 2013
- 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
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’ll 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 haven’t. We’ll be sure to provide you with all the training you need to be comfortable, knowledgeable, and effective. In fact, if you’d like to get in touch with a participant from last year to get their perspective, just let us know. We’d 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’ve 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 was interested to learn more about the brain tumor community and the challenges that patients face when dealing with this diagnosis. She clearly understood the need for more research, better treatments, and affordable access to available therapies. She committed to fight with us and to raise awareness of and organize support for these priorities among her colleagues. Congresswoman DeLauro 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.
There are many opportunities coming up this year to meet with Members of Congress in their district offices. Are you interested in setting up a meeting? Please get in touch with Jennifer Lemmerman (email@example.com, 617-393-2862). We can provide you with all the support and tools you’ll need for a successful visit.
NIH Still Needs Our Help
As we mentioned in last month’s update, the budget negotiations continue. The National Institutes of Health are still in danger of further cuts, whether through sequestration or further cuts in a deal reached to avoid sequestration. We can’t 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’d 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.
Since joining us, Jolee has looked for opportunities to spread the word, bring in new advocates and identify ways to continue to bring the voice of the brain tumor community to her elected officials. When Jolee saw that Congresswoman Jan Schakowsky was to be a guest at an event at her temple, Jolee made plans to take advantage of the opportunity. She attended the event and, between speakers, she approached the Congresswoman, identified herself as a brain tumor advocate with the National Brain Tumor Society, and thanked her for her support of the oral chemotherapy parity legislation. Something as simple as a handshake and a few quick sentences is sometimes all it takes to ensure we continue to be heard!
But Jolee wasn’t done there. As she planned her holiday party a week later, she knew there was an opportunity to ask others to join her. When inviting her guests, she asked them to write to their Members of Congress instead of bringing a gift to the party, and to get five friends to do the same. She also had a laptop set up at the party so guests could take action right there. What a great way to recruit new advocates while encouraging important discussions among party guests!
Thank you, Jolee, for all you are doing to advocate for the brain tumor community!