TCF Volunteer Abigail Linehan contributed to this webinar recap.
On May 15, we were lucky to be joined by four incredible women whose advocacy is having a powerful impact on the field of rare cancer research for The Power of Advocacy: Collective Strength Through the Rare Cancer Patient Voice webinar. Moderated by TargetCancer Foundation President Kristen Palma, the panelists included two patients and two parents, all of whom are using their voices and experiences to not only change the treatment landscape for themselves, but for all rare cancer patients.
Dana Deighton (Director, Communications & Engagement, Melanoma Research Alliance), Katie Doble (Stage 4 Rare Cancer Survivor and Patient Advocate), Naomi Natale (Co-Founder, cureMEC: The Myoepithelial Carcinoma Project) and Suzanne Vincze (Vice President, Max Vincze Foundation) participated in this discussion around the importance of advocacy for awareness and progress in the treatment of rare cancer.
Throughout the conversation, each advocate shared her powerful story of how a rare cancer has impacted her life, either through a personal diagnosis or that of a loved one. All four stories showed that there is a vast lack of information, treatment options and research when it comes to treating rare cancers. In many of their experiences, their doctors had never even heard of the type of cancer they were facing, there were no researchers focused on finding options, and there were no targeted treatments – including clinical trials – to consider. And therefore in what is a common challenge for those facing a rare cancer diagnosis, Dana, Katie, Naomi and Suzanne all had to advocate fiercely to find answers. However through their impressive work, they have brought increased awareness and funds to rare cancers, leading to more research and advancements for patients. Their experiences reinforced the notion that every little bit of effort counts, because as the science is changing every single day, one day soon the science will leapfrog ahead of the cancer and more answers and options will become available.
Dana, Katie, Naomi, Suzanne and Kristen each reinforced the importance of collaboration in order to drive progress, and echoed that collaboration is centered around relationships and teamwork. By working together, they are all ensuring that their stories and voices are being heard, especially while facing the drastic cuts to federal funding that the rare cancer community is currently experiencing. From sharing each other’s content, to developing toolkits and conducting one-on-one coaching for other families navigating the same diagnosis, the panelists are all finding ways to provide more answers and options for treating rare cancers. TCF is so grateful to work alongside them, and to learn from their examples.
You can watch the recording of the webinar on TargetCancer Foundation’s YouTube channel.