Together voices are stronger. Together communities make change. This past May during Brain Tumor Awareness Month I had the great privilege to participate in the National Brain Tumor Society's Head to the Hill Event. Head to the Hill is a powerful advocacy event held yearly in Washington, D.C. During the two day event, 304 advocates … Continue reading Head to the Hill: Brain Tumor Patient Advocacy
This is excellent work by METAvivor, the sole US organization dedicated to awarding funding for stage IV breast cancer research. This October let’s take action. Let’s help fund research for the 30% of women who develop metastatic breast cancer. Did you know that metastatic disease only receives 2% of breast cancer research funding? That’s not a typo. 2%. Or, did you know that outcomes haven’t changed for metastatic patients in 10 years? Please, watch this video, all the way to the end, and if you want to make a difference this October, don’t just shop pink. Give money to organizations like METAvivor, that directly fund research for patients.
Something must be in the water. First, in January, there was the absurd cancer patient shaming that the awful Keller duo vomited on the public. Now, we have Kohl's and Susan G. Komen undermining the work of METAvivor, the only organization in the U.S. dedicated to awarding research funding for Stage IV breast cancer. METAvivor … Continue reading Drowning in Pink
Ever left your doctor's office and felt frustrated, irritated and generally annoyed? I think we all have. Today I'd like to talk a bit about patient experience, and tell a story that highlights a practice that I think is getting it right. Patient experience is not just your interaction with your healthcare provider. To me, … Continue reading Getting Patient Experience Right.
The first time I ever heard of a patient advocate was when I attended a talk given by Melissa Pantel-Ku. Melissa is remarkable woman. Diagnosed with stage III breast cancer at 34, she is a PhD, a professor, a mother, a wife, a breast cancer survivor, and founder of Hope & Humor. Melissa's story had … Continue reading A who? A patient what? A Patient Advocate.