Top 10 reasons I am a brain tumor advocate
This week I joined with hundreds of my fellow brain tumor advocates from around the country in Washington, DC, to attend the annual “Head to the Hill” lobby day organized by the National Brain Tumor Society. This is the second year in a row I’ve traveled to our nation’s capital to educate our members of...
Questions submitted for the 2012 National Brain Tumor Society Summit
Before I left for the National Brain Tumor Society’s annual summit I asked The Liz Army blog readers if you had questions you would like me to ask doctors and health care professionals I would presumably meet at the event. Keep in mind, I had never attended an NBTS summit and I did not know...
What do you want me to learn at the National Brain Tumor Society Summit?
NOTE: I am no longer accepting questions to bring to the NBTS Summit. Later this week I am attending the National Brain Tumor Society’s (NBTS) annual summit in Boston, MA. According to the website, the Summit brings together “Patients and families, advocates, researchers, clinicians, and government and industry professionals who will connect, share the latest...
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
A typical young adult cancer experience So there I was, lobbying members of Congress on the importance of brain tumor research, funding, and parity for oral forms of chemotherapy, when suddenly I got emotional. I didn’t think it would happen to me. The majority of my cancer experience has been tear-free like a Johnson &...
Brain tumor advocacy in full swing: it’s time to educate Congress
Apologies: This was typed on my iPad and I didn’t have time to do much editing. I’m in Washington DC today to do something pretty amazing. I’m working with the National Brain Tumor Society to lobby Congress for two things: Lobby our elected leaders to focus on brain tumor research Ask for “chemo parity”...
Brain surgery: the inside story (pun slightly intended)
I volunteer as a “Mentor Angel” with a group called Imerman Angels. This organization carefully matches and individually pairs people touched by cancer (a cancer fighter, survivor or caregiver) with someone who has fought and survived the same type of cancer (a Mentor Angel). I’ve been volunteering with Imerman Angels for nearly six months, and before...
Join my team for the Bay Area Brain Tumor Walk
Dear friends, family and people we don’t know: Are you ready to join a crew so fierce that brain cancer cowers at the mere mention of our name? Team Glioma Girls invites you to join us for the Bay Area Brain Tumor Walk in Golden Gate Park in San Francisco, California, on Saturday, May 5,...
The girl with the octopus tattoo
In case anyone is wondering about the progress of my brain cancer-inspired tattoo, it is going along swimmingly. The photo to the right was taken after my most recent sitting–there have been eight in total, and I have about 1-2 sessions left. In other news, I talked with the director of public policy for the...
National Brain Tumor Society refers tumor support to Imerman Angels
The National Brain Tumor Society recently sent an announcement that they will be discontinuing their Patient Line and Support Network to instead focus more on research and public policy. While I am bummed about the discontinuation of the patient support network (as I was one of the support peeps) I totally understand the decision made...
My head is in the game
Brain tumor patients, survivors, caregivers and friends–listen up! Get Your Head in the Game is the movement we’ve all been looking for… a way we can spread awareness about a malady invading our lives–and heads. Through knowledge and action, the GYHITG folks are educating the nation about brain tumors, how they impact our lives and...
Congratulations
The best part about being done with treatment is that people are no longer uncomfortable around me. When you are in treatment and you tell people you have cancer they look at you with pity. Friends ask how things are going with a lowered voice. They don’t know how sensitive you are. How are things with...
