National Brain Tumor Society – Public Policy and Advocacy Update
Vol. 2 No. 11
November 26, 2012
- Please Write to Your Members of Congress TODAY to Protect NIH
- National Brain Tumor Society Testifies on Behalf of Brain Tumor Patients at the Food and Drug Administration
- NEEDED: Temodar Stories from Brain Tumor Patients in Idaho and Kansas
- November Advocate of the Month: Amanda Haddock of Kansas
Please Write to Congress TODAY to Protect NIH
We know that leaders in Washington, DC are working to reach a deal on the upcoming fiscal cliff, or sequestration. For more information, see our recent policy update. From now until the sequestration deadline of January 2, 2013 - or until a deal is struck - we need to be sure that our message continues to reach Congress loud and clear. Write to your Senators and Representatives today and ask them to protect the largest funder of brain tumor research in the country, the National Institutes of Health. We cannot afford further cuts to these important funds.
NBTS Testifies on Behalf of Brain Tumor Patients at the Food and Drug Administration
On October 25, the National Brain Tumor Society testified at public meeting of the Food and Drug Administration (FDA) to urge the agency to include brain tumors as one of the diseases it focuses on for a new initiative designed to include patients in drug development. We all know that brain tumor patients want better drugs that both extend life and improve it. Read our letter conveying the same message as our recent testimony.
NEEDED: Temodar Stories from Brain Tumor Patients in Idaho and Kansas
Your advocacy for access to affordable chemotherapy continues to pay off. Members of Congress and their staff are increasingly aware of the problem. The list of cosponsors in the House continues to grow. (We are now at 53!) We also know that there are Senators who are interested in supporting companion legislation and are trying to ensure that key offices hear about this issue from the patients and family members who have experienced it. Do you or someone you know live in Idaho or Kansas and have an oral chemotherapy story that you’d be willing to share with your Congressional offices – with our help? If so, please contact Jennifer Lemmerman at firstname.lastname@example.org or 617-393-2862.
November Advocate of the Month: Amanda Haddock of Kansas
This month, we’d like to introduce you to Amanda Haddock, our Kansas Lead Advocate and the November Advocate of the Month. After her son, David, was first diagnosed with brain cancer in 2010 at the age of 16, she began her blog This Grey Matters to document the family’s experience. Through her blog and the large circle of friends surrounding her son and her family, Amanda has become very active – raising funds and awareness for the brain tumor community. Shortly after attending the State Lead Advocate Convening in October, Amanda put the training she received to good use – speaking in front of a large group of colleagues about her story and how they can help. Amanda is using her experience as a parent who lost a child to a brain tumor to advocate for the needs of our community and to be a strong voice in support of all the other families who are fighting this disease. Thank you, Amanda!