Katie Coleman, Senior Advisor for Translational Innovation at Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute, shared a post on LinkedIn:
“Spending Rare Cancer Day in awe of the sheer pace of change that has been catalyzed in the past 72 hours by a motivated and committed community coming Together for Chromophobe. As a stage IV rare cancer survivor myself, it’s safe to say, I have never been more inspired.
I actually don’t have chromophobe RCC myself, which often surprises many who follow my efforts. I have a single digits kind of rare type of kidney cancer but was introduced to the chromophobe community back in the early days of my diagnosis.
I learned during this time about the lack of treatments and research for chRCC and was baffled about how little was known about it. I started asking questions about how this could be.
Back then, the answers I often encountered were ‘it’s too rare’, ‘it’s just how it is’, and ‘there’s no funding for it’. Matter of fact, never even up for debate.
But this past weekend, we took these statements head on in the first ever Think Tank for Chromophobe Kidney Cancer. Bringing in experts from all across the country including scientists, clinicians, nonprofit leaders, philanthropic donors, and patients/advocates who have lived experience fighting this disease.
No ideas too big, no question too small, and everything was up for debate.
Our advocates pushed and inspired the room. When barriers around funding were raised, they knocked them down, and challenged the group to keep iterating. When opinions differed, they pushed for collaboration and challenged the room to use their collective experience as a catalyst for change.
This group has gone beyond just rising to the occasion, they are actively changing the landscape for this rare cancer as we speak.
New collaborations have been formed, sample pipelines set in motion, new experiments initiated, and concepts for trials are already taking shape.
This is how we change the narrative on rare cancers.
Wrapping up Rare Cancer Day feeling grateful, humbled, and more inspired than ever.”
You can also read: Remembering Sydney Towle: How a Young Influencer Turned a Rare Cancer Diagnosis Into a Global Conversation
