The Kidney Cancer Association (KCA) launched an Affiliate Program to bring together like-minded organizations and advocate in partnership for medical advances that improve the lives of people with kidney cancer.
The inaugural group of KCA affiliates are the Chris “CJ” Johnson Foundation, the Chromophobe and Oncocytic Tumor Alliance, and Joey’s Wings Foundation, each of which focus on a rare subtype of kidney cancer.
“I am elated to exemplify our tagline – ‘Unstoppable Together’ – and work in close partnership and collaboration with the most impactful rare kidney cancer groups,” said Gretchen E. Vaughan, KCA President and CEO.
“Together, we will reach more patients, construct specific research strategies for each rare type, collaborate with clinicians and scientists throughout the world, and build initiatives together that support our missions. Through this collective effort, we know the future of kidney cancer support and research will be transformed. It’s an honor to serve the kidney cancer community alongside all three of these respected leaders and organizations!”
Through the founders’ personal experiences, which are reflected in their missions and activities, each affiliate group has expertise in a certain kidney cancer type:
President & Founder: Ritchie Johnson, MBA, BSN, RN
Focus: Renal medullary carcinoma (RMC)
Mission: The Chris “CJ Jonson Foundation is a global community dedicated to creating awareness and alleviating healthcare disparities for individuals diagnosed with RMC through advocacy, education and research. Ultimately, all persons affected with RMC will have equal access to institutions that are leaders in cutting-edge research.
President & Founder: Katie Coleman
Focus: Chromophobe renal cell carcinoma (ChRCC)
Mission: Fund research that aims to identify biological hallmarks of ChRCC to deepen learnings across institutions and to support efforts that aim to identify and test distinct therapeutic approaches. Additionally, we aim to promote collaboration, create resources for those affected by the disease and to advance the understanding of ChRCC through the dissemination of knowledge and research.
President & Founder: Kathy Liu
Focus: Translocation renal cell carcinoma, pediatric kidney cancer
Mission: Fund research that focuses on kidney cancers affecting children and young adults, raise awareness and provide support to families affected by childhood cancer.
“The Chris ‘CJ’ Johnson Foundation Inc. is excited about the opportunity to become an official partner with the Kidney Cancer Association,” said Ritchie Johnson, who’s son Chris died of RMC and inspired her to found the group. “Joining forces with this amazing organization will allow us a larger platform to expand lobbying opportunities, expand our outreach, amplify our voices, and provide expertise in the area of RMC.”
About 600,000 people live with kidney cancer in the US and nearly 82,000 people will receive a kidney cancer diagnosis this year. RCC is the most common type of kidney cancer, making up about 75% of diagnoses. Rare subtypes of kidney cancer represent a small portion of the total diagnoses therefore very little is understood about how or why they develop. People with these rare subtypes are often diagnosed when the cancer is in a more advanced stage and there is less likelihood that they will be able to access expert care, effective treatment, or a clinical trial, if such trials exist.
“COA is thrilled to partner with the KCA as an affiliate, signifying a unified approach to advancing much-needed research and treatment options for patients with ChRCC,” said COA founder Katie Coleman, who was diagnosed with stage 4 kidney cancer in 2020. “We believe collaboration is essential to changing the tides in rare cancers, and combining efforts with the KCA will allow us to provide the best possible resources to patients as we work together to move research forward for ChRCC.”
“The affiliation can help us promote the awareness of translocation RCC,” said Kathy Liu, President & Founder of Joey’s Wings Foundation. “The teamwork will accelerate research and treatment options, patient care and advocacy for developing less toxic therapies to treat kidney cancer among children and young adults.”
Through affiliate partnerships, the KCA can bolster collective grassroots advocacy efforts and support people impacted by these cancers by providing expert resources as well as the researchers studying these rare kidney cancer types.
The KCA’s annual grant program, currently accepting applications, reflects the increased importance of research in rare kidney cancer subtypes with three out of five grants designated for proposals in ChRCC, papillary RCC, and translocation RCC, the latter in partnership with Joey’s Wings Foundation.
While the current group of affiliates have specific disease areas of focus, the KCA’s Affiliate Program can accommodate any type of kidney cancer-focused group.
March is a significant time to introduce the KCA’s affiliate partners because it is Kidney Cancer Awareness Month, during which the KCA highlights the collective efforts of patients, families, and anyone who advocates to move the needle in kidney cancer.
Senior Director of Communications
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