National Brain Tumor Society Public Policy and Advocacy Update

Vol. 5, No. 1

January 2015

New State Lead Advocates for 2015

Save the Date: Head to the Hill 2015

New State Lead Advocates for 2015

This year, we are fortunate to have three new State Lead Advocates joining some of our veteran advocacy leaders to help carry out our advocacy agenda in their home states. Our State Lead Advocates are leaders in our public policy advocacy program; they recruit new advocates in their state, build relationships with their members of Congress, and serve as leaders in the brain tumor community.

Holly Houska is the new State Lead for Illinois, taking over from Jolee Rosenkranz, who led a highly successful program in the state and was instrumental in securing her Senator’s support for Oral Chemotherapy Parity legislation. Holly is a brain tumor survivor who first became involved with the National Brain Tumor Society by attending Head to the Hill soon after her brain surgery in 2013. She looks forward to educating brain tumor patients in her state about the resources available to them, as well as recruiting more Illinois advocates for Head to the Hill and year-round advocacy activities.

Shanae Jennings is the National Brain Tumor Society’s first Texas State Lead advocate. Shanae is a brain tumor survivor who originally got involved with the National Brain Tumor Society’s Dallas-Fort Worth Brain Tumor Walk, leading a strong team of her family, friends and supporters. Her first official engagement with brain tumor advocacy was at Head to the Hill 2014, where she met other Texas advocates, attended meetings with her members of Congress, and become interested in getting more involved. Shanae looks forward to introducing those she already interacts with in the brain tumor community to advocacy, as well as meeting anyone else in Texas who is looking to get more involved.

Gina Memmott is our newest Virginia State Lead Advocate, taking over the role from Catherine Darling. Gina and her family became involved with the National Brain Tumor Society after losing their son Benjamin to a brain tumor in 2009. Since becoming involved, Gina has become a skilled advocate who takes part in numerous advocacy days on Capitol Hill throughout the year. Gina has already been a leader and mentor in the brain tumor advocacy community for many years, and will now be helping to increase involvement and build relationships in Virginia.

If you would like to be connected with the State Lead Advocate in your region, please contact advocacy@braintumor.org.

Welcome and thanks to Holly, Shanae and Gina!

Save the Date: Head to the Hill 2015

Save the date for our annual Head to the Hill advocacy event on May 4 & 5 in Washington, D.C.! Last year’s Head to the Hill  event was our biggest yet and was inspirational and motivating for all who attended. An advocate who participated in Head to the Hill 2014 had this to say:

"Since losing my dad 2 years ago to a GBM, you and these type of activities have given me some hope in a situation that at the time felt completely hopeless. I know the work I do can't bring dad back, but hopefully it can make things better for the other warriors, survivors, caretakers, and their families."

We hope that patients, caregivers, researchers, and clinicians can join us for this incredible experience in 2015. We will start with a day of policy and advocacy training on Monday to give you all the tools you need to effectively lobby your member of Congress, whether this is your first time at the Capitol, or you have been advocating for years. On Tuesday you’ll put those advocacy skills to use during your day of Congressional meetings.

Registration will be opening in February 2015. For now, mark your calendars and contact advocacy@braintumor.org with any questions.

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

David F. Arons

Chief Public Policy & Advocacy Officer

darons@braintumor.org

Lainey Titus Samant

Associate Director

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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