In this episode we will focus on rare cancers.  These are the step children of cancer.  They get fewer dollars for research, patients may have more limited treatment options and the challenges for advocates to raise awareness and build support can be daunting.  Let’s talk about the unique experience of people with rare cancers. 

For this episode I am joined by Jim Palma and John Hopper.  Jim and John are colleagues and friends, and are both leaders in the rare cancer community, leading research and advocacy efforts, bringing focus and improved outcomes for this underserved group patients.  Jim Palma is the Executive Director of the Target Cancer Foundation.  Jim joined TargetCancer in 2010, Jim has overseen its growth from a small start-up to a nationally recognized foundation supporting comprehensive rare cancer research programs and patient support services. Jim is a member of the Board of Directors of the National Organization for Rare Disorders (NORD), and is a founding Co-Chair of the NORD Rare Cancers Coalition. 

In addition, Jim is a Steering Committee member at the GI Cancers Alliance and the Global Cholangiocarcinoma Alliance. 

CancerRebranded Episode #3 – BEING QUEER AND HAVING CANCER

Hello and welcome to Cancer Rebranded.  I’m Craig Lustig.  In this episode we will focus on the intersection of being LGBTQ and having cancer.  How have the issues and challenges that I faced in 1992 as a late-twenty-something gay man with cancer changed and what are the current challenges?

For this episode I am joined by someone who brings a wealth of professional and personal experience and expertise to this topic, Scout.  Scout is the Executive Director of the National LGBT Cancer Network.  Scout serves as the principal investigator of both the CDC-funded LGBTQ tobacco-related cancer disparity network and Out: The National Cancer Survey.  Scout spends much of his time working with various agencies to expand their reach and engagement with LGBTQ+ populations. Scout works in  health policy analysis and has a particular interest in expanding research in the LGBTQ+ community.  He has faculty appointments at both Brown University and Boston Universities’ Schools of Public Health.  Scout is an openly nonbinary and trans father of three.

Hello and welcome to Cancer Rebranded.  I’m Craig Lustig.  This is part 2 of my two-part conversation with Dr. Jonathan Finlay.  When I was diagnosed with a very rare brain cancer in 1992, Dr. Finlay was leading the only US clinical trial for this tumor type.  

 Jonathan and I had a lengthy, in-depth conversation covering what has changed over 30 years in the treatment of children with brain tumors, how he got into this field and his personal cancer story.

 Let’s get to our conversation with Jonathan.  Just a note, this is an audio-only episode.

 Thank you, thank you, for sharing your time, for listening.  Simply by your participation, you are a cancer advocate.