November 5-6, 2025
On Wednesday Nov 5th, I had the honor of sitting at a round table with experts and advocates for rare disease. The three round table speakers were Michael Hund (CEO of EBRP), Emma France (CEO at Follicular Lymphoma Foundation) and Chris March (CEO of LHON). I was able to listen to the importance of collaboration across rare cancers and rare disease experts. They spoke about the importance of advocates leading the charge to help generate funds for research. It was a great discussion on venture philanthropy and advocacy.
On Thursday Nov 6th, I spoke on the panel “Conquering Cancer: Innovations Closing Gap and Improving Outcomes” with Iain Foulkes (CEO of Cancer Research Horizons), Jesse Boehm (CEO of Break Through Cancer), and Julian Adams (CEO of Stand Up 2 Cancer). The experience was educational, inspiring, and gave me hope into the future developments of rare cancer treatment. I was able to speak about my personal journey as a caregiver to Patrick during his fight against NUT carcinoma, and the heartbreaking reality of rare cancer awareness. My main points of emphasis were that rare cancer can affect anyone and the need for advocacy is extremely important. I spoke about how given how healthy and active Pat was, cancer came out of nowhere and disrupted the trajectory of our lives. It does not discriminate! The lack of treatment guidelines and clinical trials centered around NUT carcinoma is significantly lower than other cancers. I shared how during our care we encountered professionals who were unaware of the disease, and it left us with the reliance on ourselves to figure out the best care. When I reflect on the talk, I am hopeful that my message resonated with the group and the listeners. I am so thankful for the opportunity.
