named programs · 3 · from sources
What they call their work
Advocacy for Federal Research Funding
Lobbies Congress to secure dedicated funding for kidney cancer research through the Department of Defense’s Peer Reviewed Cancer Research Program
Patient and Public Education
Provides resources and information on kidney cancer causes, prevention, early detection, and treatment options for patients, caregivers, and the general public
Peer Reviewed Kidney Cancer Research Grants
Funds innovative, high-risk research projects in kidney cancer, prioritizing areas neglected by pharmaceutical companies, including chromatin remodeling, immunotherapy, and early detection technologies
activities · 4 groups
What they do
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Healthcare Policy Advocacy 1 activity
- Advocacy for federal kidney cancer research fundingConducts advocacy campaigns to secure federal funding for kidney cancer research, including lobbying Congress, organizing survivor and caregiver visits to Washington, DC, and leading letter-writing and briefing efforts with policymakers. Successfully contributed to the establishment of the Department of Defense Kidney Cancer Research Program and secured congressional appropriations, resulting in hundreds of millions of dollars in federal research funding since 2006.
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Biomedical Research and Innovation 1 activity
- Conducting and funding biomedical research on kidney cancerConducts and funds original research into the genetic, metabolic, and immunologic basis of kidney cancer, including studies on HIF proteins, mTOR pathways, chromatin remodeling genes, and immune checkpoint therapies. Also supports development of novel diagnostics and treatments such as urine-based tests, targeted nanoparticles, and CAR-T cell enhancements.
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Cancer Research Funding 1 activity
- Funding kidney cancer research through grantsAwards grants to support kidney cancer research projects, particularly those not prioritized by pharmaceutical companies. Has funded over 23 grants totaling more than $460,000 since 2006, supporting studies on genetic mechanisms, immunotherapies, early detection methods, and rare kidney cancer subtypes at institutions including the National Cancer Institute and St. Lukes Roosevelt Hospital.
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Disease-Specific Clinical & Patient Education 1 activity
- Providing patient education and treatment informationPublishes patient education guides and provides detailed information on FDA-approved treatments, clinical trial populations, and drug mechanisms to support patients and caregivers in managing kidney cancer from diagnosis through treatment.
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financials · form 990EZ · fy2025
revenue
Total revenue$0
Contributions & grants——
Program service revenue——
Investment income——
Other revenue—
expenses
Total expenses$3K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits—
Grants paid out—
balance sheet
Total assets$95K
Cash—
Investments—
Liabilities—
Net assets$93K
3 years on record · 2022–2025 · YoY revenue -100.0%
relationships · 43
Who they work with
- ASCO Partner — Collaborates on cancer research and policy issues, as reflected in shared reporting and participation in joint forums.
- American Society for Clinical Oncology Partner — References and summarizes clinical treatment guidelines issued by ASCO for metastatic renal cell carcinoma.
- American Society for Radiation Oncology Partner — Participates in multi-organization summits addressing cancer health disparities.
- Avelumab Partner — Approved in combination with axitinib for kidney cancer treatment, with approval date specified as May 2019.
- Axitinib Partner — Referenced in combination therapy with pembrolizumab and avelumab for kidney cancer treatment.
- Belzutifan Partner — Used as a hypoxia-inducible factor (HIF) inhibitor for patients with von Hippel-Lindau disease and associated renal cell carcinoma.
- Bristol-Myers Squibb Partner — References clinical trial data from CheckMate 214, a trial sponsored by Bristol-Myers Squibb, in reporting on nivolumab and ipilimumab for kidney cancer.
- Dana Farber Institute Partner — Collaborates with researchers from Dana Farber Institute, including Dr. Toni Choueiri, on clinical trials and treatment advancements for kidney cancer.
- Department of Defense Government — Advocated for inclusion of kidney cancer in the Congressionally Directed Medical Research Programs (CDMRP).
- Department of Defense Government — Federal agency through which ACKC secured funding for kidney cancer research via the Congressionally Directed Medical Research Programs.
- Department of Defense Government — Succeeded in having kidney cancer included as an eligible disease in the DoD's Peer Reviewed Cancer Research Program, enabling access to federal research funding.
- Department of Defense Government — Successfully advocated for inclusion of kidney cancer in the Department of Defense's peer-reviewed cancer research program.
- Department of Defense Kidney Cancer Research Program Government — Successfully lobbied for the creation of the KCRP program.
- European Oncology Nursing Society Partner — Engages in international dialogue on cancer disparities through joint summit participation.
- European Society for Medical Oncology Partner — Reports on research presented at the ESMO Conference, indicating engagement with international oncology research communities.
- Facebook Network — Uses Facebook to engage its online community of survivors, caregivers, and family members.
- Fox Chase Cancer Center Partner — Funded the purchase of a PCR machine for early-stage kidney cancer detection research at Fox Chase Cancer Center.
- Fred Hutchinson Cancer Research Center Partner — Funded joint research with UCLA to develop a blood test for early kidney cancer detection.
- MD Anderson Cancer Center Partner — Funded research on the SETD2 gene and kidney cancer development at MD Anderson Cancer Center.
- Mayo Clinic Partner — Supported research at multiple Mayo Clinic locations including Scottsdale, AZ and Jacksonville to study DNA changes and molecular signatures in kidney cancer.
- National Cancer Institute Government — Appealed to develop a strategic plan to combat kidney cancer.
- National Cancer Institute Partner — Funded research projects led by Marston Linehan at the National Cancer Institute.
- National Cancer Institute Partner — Recipient of a $50,000 research grant from ACTION TO CURE KIDNEY CANCER for work in the Urologic Oncology Branch.
- National Comprehensive Cancer Network Partner — Engages in discussions on cancer health disparities through joint summits and policy dialogue.
- National Institutes of Health Partner — Funded research on human endogenous retroviruses in renal cell carcinoma at NIH.
- Pembrolizumab Partner — Approved in combination with axitinib for kidney cancer treatment, with approval date specified as April 2019.
- Pfizer Partner — Launched a campaign to petition Pfizer to develop axitinib (AG-13736) for kidney cancer treatment.
- Queen Mary University Partner — Cites research reported by Thomas Powles from Queen Mary University on combination therapy for kidney cancer.
- Rep. Jared Polis Partner — Provided critical support in securing federal research funding for kidney cancer.
- Rep. Nita Lowey Partner — Key congressional ally who helped secure increased funding for the Kidney Cancer Research Program, including a $10 million allocation in FY2017 and subsequent increases.
+ 13 more
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Coalition-Based Policy Influencemethodology: policy-coalition-buildingBy building coalitions with policymakers, government agencies, and research institutions, we produce policy and funding changes because collective advocacy amplifies credibility and political leverage, increasing the likelihood of inclusion in federal research programs.
- Environmental Investigation to Link Exposure and Diseasemethodology: environmental-exposure-investigationBy investigating environmental contaminants like PFAS in affected communities, we produce public health awareness and policy change because demonstrating causal links between exposure and kidney cancer incidence strengthens advocacy for prevention and regulatory reform.
- Federal Research Advocacy as Leverage for Systemic Investmentmethodology: federal-research-advocacyBy advocating for federal funding through legislative and policy channels, we produce sustained investment in kidney cancer research because government funding enables large-scale, high-impact research that the private sector is unlikely to prioritize due to market limitations.
- Patient-Driven Narrative Advocacymethodology: patient-advocacy-mobilizationBy mobilizing patients and caregivers to share personal stories with policymakers, we produce greater political will for research funding because lived-experience narratives humanize data and create emotional urgency that drives legislative action.
- Research Focus on Unmet Needs to Drive Innovationmethodology: research-advocacy-through-unmet-needsBy targeting research advocacy toward areas of unmet medical need—such as lack of screening tests and ineffective adjuvant therapies—we produce innovation because highlighting gaps directs funding and scientific attention to underserved but high-impact areas.