Katie Coleman: Coffee with Chromies Is Back
Katie Coleman, Founder at OncoLogic Solutions and President of Chromophobe and Oncocytic Tumor Alliance, shared a post on X:
“Breaking out of the group chat.
Four years ago, I was recovering from surgery and messaging my support system, the ‘chromophobe six‘, about the lack of research, info, and community for chRCC. There wasn’t a single funded foundation grant for chRCC at the time.
This evening, I had the honor of opening our first virtual patient support group for chRCC by sharing how far we’ve come since then.
7 funded grants, awards, or initiatives dedicated specifically to chRCC since 2022. Supported by several foundations, including Chromophobe and Oncocytic Tumor Alliance, Kidney Cancer Association, and KCCure.
Dedicated foundation formed Chromophobe and Oncocytic Tumor Alliance
- Several major papers published unraveling the biology of chRCC.
- Including one published paper exploring the possibility of targeting C-KIT with ADCs (research these grants helped support).
- The opening of a trial is currently available to chromophobe patients exploring ADCs and C-KIT NCT06805825.
Chromophobe webinars hosted this year through COA, with a total of over 140 registrants between the two
A tissue donation program through pattern.org, where patients undergoing surgery for chRCC can donate their tumors while it’s still viable to institutions studying it
- A blog series highlighting the voices of those affected by chRCC
- Ongoing efforts working toward a patient registry and biobank
- A dedicated virtual support group is held every 8 weeks for patients. The first of which we held tonight.
As I listened to the group share their stories and how many of them were told they’d likely never find another patient like them and how little was known about their disease, I was grateful that we not only could all come together tonight but also for the fact that their voices are finally being heard.
Thank you to the kidney cancer community for elevating chromophobe RCC.
We’ve been busy at Chromophobe and Oncocytic Tumor Alliance to keep the momentum going. Stay tuned for more exciting efforts underway.
Possibly the most ironic part of this entire thread is the fact that exactly 4 years ago today, I received my pathology report from surgery confirming I didn’t have chromophobe RCC but instead, a metastatic oncocytoma.
Still been advocating for this community every day since.”
More posts featuring Katie Coleman.
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Challenging the Status Quo in Colorectal Cancer 2024
December 6-8, 2024
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ESMO 2024 Congress
September 13-17, 2024
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ASCO Annual Meeting
May 30 - June 4, 2024
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Yvonne Award 2024
May 31, 2024
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OncoThon 2024, Online
Feb. 15, 2024
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Global Summit on War & Cancer 2023, Online
Dec. 14-16, 2023