“Has anyone done any fundraising or advocacy projects to help raise money or awareness for Chromophobe RCC? Every specialist I talk to mentions the limited research in chromophobe since we are not as common as clear cell.”
– Catherine Yutmeyer, chromophobe kidney cancer patient
At KCCure, we pride ourselves on being an evidence-based, patient-driven advocacy organization. But when I saw this post in our chromophobe patient community, I realized that we were relying too heavily on providers to set the priorities for our research grant program. To be true to our values, we needed to bring patients into the process.
Our communities for rare subtypes of kidney cancer have grown dramatically over the past few years. Over and over again, we hear the desperation of people raising concerns about why more isn’t known about treating these rare diseases. Our survey data show that patients with rare subtypes have higher anxiety rates – and feel left out of the research process. And they are right to feel that way.
When I reached out to Catherine to see if she would be interested in leading a patient-driven research effort in Chromophobe RCC, I was prepared for how the conversation might go.
Routinely, people are discouraged by the tough reality that the first step in funding research is … fundraising. Asking people for money isn’t fun. There are no easy “ice-bucket challenge” ideas that result in overnight success. It is painstakingly slow and involves asking over and over again and watching small dollar amounts build up.
But Catherine didn’t flinch. She was prepared for the task. She asked me tough questions too: “Will this research make a difference for me?”
I was honest, “Maybe not. Research funded today can take more than a decade to filter into something meaningful for patients and sometimes rather than telling us what works, research reveals something that doesn’t work.”
But that didn’t dissuade Catherine either. She told me that just doing something to drive researchers to focus on Chromophobe would be meaningful for her – if for no other reason than to feel like she was taking control over something that was taken from her.
Since our first conversation last fall, Catherine has built an amazing team of patients dedicated to establishing the first ever KCCure Chromophobe Kidney Cancer Research Grant. Together, they have raised over $30,000 toward a $50,000 goal.
- $50,000 is enough money to fund lab work for one year, and;
- It is a meaningful enough amount to encourage top researchers to submit competitive proposals.
Proposals will go through our peer review process that involves the top doctors around the country to ensure that the best science is being funded. But patients will make the final decision about who gets funding and they will interact with the researchers to get updates and share news about how research efforts are going.
My hope is that the KCCure Chromophobe Research Grant will grow into a larger program, funding multiple grants each year. I’m also hopeful that it will set the stage for the formation of more patient led teams to drive research into other needed areas: Papillary RCC, Translocation RCC, and funding for research into improving understanding and management of localized disease. Where patients see a need – we can serve as a platform for them to drive research toward filling that need.
Want to Help?
If you have been diagnosed with Chromophobe Renal Call Carcinoma, connect with others in our ChRCC Community.