Episode 27: The Worst Club with the Best People, with Julia Maues and Christine Hodgdon
I often say that having breast cancer introduces you to the worst club with the best people. It seems so strange, but it’s so true. In particular, it seems like the worse things get - at least for me - the better the people are. When I was first diagnosed, I found an incredible community willing to circle the wagons around me. That community grew tighter and more generous with their time, resources, and support after I was diagnosed metastatic. Even mores when I discovered I had brain mets. It’s truly amazing, and I could not be here, doing what I do, without the unflinching support of this group of people.
Two of the people who have been critical pieces of that support system are my guests today. Julia Maues and Christine Hodgdon are both women in their 30s living with metastatic breast cancer. They’re incredible researchers, advocates, and brilliant educators for those both in and outside of the metastatic breast cancer community. Julia was diagnosed with HER2-positive breast cancer while pregnant at age 29. After her son was born, she found out the cancer was metastatic and had spread to her brain, liver and bones. She has been in active treatment since 2013.
For the first few years after her metastatic diagnosis Julia did not get involved in support groups or advocacy. When her oncologist asked her to speak at a fundraiser for his research she realized the power of sharing her story. Being able to help other patients going through similar struggles and to help researchers better work for patients have been extremely rewarding. As she has gotten more involved with breast cancer advocacy she has become more aware and outspoken about the struggles that the metastatic breast cancer community, in particular, faces.
Julia is a member of multiple advocacy groups that work with researchers, clinicians and other stakeholders to ensure that research is patient-centered, innovative and accessible. She is a graduate of Living Beyond Breast Cancer Hear My Voice program and the Alamo Breast Cancer Program. Julia has spoken at the San Antonio Breast Cancer Symposium, the YSC Summit, the DC Komen MBC Conference. Behind the scenes, Julia has served on American Society of Clinical Oncology (ASCO) guideline panels, as a reviewer for the Department of Defense Breast Cancer Research Program and is an active member of local support groups in D.C. and closed Facebook groups for people with metastatic breast cancer.
Christine has been a breast cancer advocate since her metastatic breast cancer (MBC) diagnosis in April 2015. Her goal as an advocate is to represent the collective voice of young MBC survivors. As a patient who falls into both the young and metastatic cohorts, she feel uniquely qualified to bridge the gap between doctors and patients. she aims to work with scientists to identify and address the disparities that exist in patient care, especially in underserved and vulnerable populations that are disproportionately impacted by breast cancer. she has even launched her own website TheStormRiders.org as an education tool for the breast cancer community. The mission of the Storm Riders Network is to 1) provide the most up-to-date scientifically accurate information about breast cancer and its treatments, and 2) to distill this information into a digestible format that is easy to understand. The website now includes a database of MBC-specific clinical trials and promising drugs.
Today, these two incredible women talk about their individual advocacy works, as well as their collaborative efforts, and the critical importance of friendship within the metastatic community.
Thank you so much for listening to the Intersection of Cancer and Life. For show notes and more about each episode, you can go to my website, emilyrgarnett.com/podcast. I’m also on instagram @beyondthepinkribbon, twitter @emrgarnett, and facebook @beyondthepinkribbonblog. If you have questions, comments, or just want to say hi, you can email me at email@example.com.
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