Kidney Cancer Coalition, Inc.

Accelerating Cures

aka KidneyCAN   |   Philadelphia, PA   |  www.kidneycan.org

Mission

Our mission is to accelerate cures for kidney cancer. We engage in patient advocacy, and we power research by supporting government and industry research funding, facilitating research collaborations, and offering direct financial support for clinical and laboratory researchers with promising ideas. Together, we can find the cure.

Ruling year info

2016

CO-FOUNDER, TREASURER

BRENDA KNAPP

PRESIDENT, CO-FOUNDER

BRYAN LEWIS

Main address

8327 Germantown Avenue

Philadelphia, PA 19118 USA

Show more contact info

EIN

81-3352468

NTEE code info

Kidney (H44)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

KidneyCAN accelerates life-saving research and clinical trials for kidney cancer through fundraising and advocacy. Battling what is among the most prevalent forms of cancer among men (#6) and women (#9) in the U.S. – yet still among the most under-funded and under-recognized cancers – patients, caregivers, advocates, and scientists are in dire need of greater awareness, funding, and action. That is our focus.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

KIDNEY CANCER RESEARCH SUMMIT

Kidney Cancer Research Summit (KCRS) is a two-day meeting for global stakeholders in kidney cancer research. This is an annual meeting comprised of clinicians, researchers, research advocates, scientists, medical oncologists, industry, and others to discuss the future efforts for collaboration in kidney cancer research.

Population(s) Served

KidneyCAN has generated growing momentum in the kidney cancer community for hosting successful fly-ins (both live and virtual) to Washington, D.C. These congressional visits raise awareness of kidney cancer and educate legislators and staff regarding issues relevant to the community. KidneyCAN has been responsible for organizing and arranging more than 700 Capitol Hill visits, Congressional briefings, and ongoing advocacy activities on Capitol Hill. We would like these Congressional meetings to be a vehicle for the kidney cancer community to coalesce its legislative messages and deliver those messages to our elected representatives.

Population(s) Served

KidneyCAN's Town Hall Series is designed to educate patients on the latest kidney cancer news and research. Each Zoom webinar will feature a panel of leading kidney cancer experts to break down the most recent news in patient-friendly language and discuss various topics important to the kidney cancer community. The format is lively and interactive, allowing patients and caregivers the opportunity to engage directly with experts and ask questions.

Population(s) Served

KidneyCAN's Patient Resource Center is designed to provide KidneyCan website visitors with a quick, concise, and easily navigable solution to finding answers to critical questions for the newly diagnosed patient and determining next steps in treatment options.

Population(s) Served
Adults

Where we work

Accreditations

Charity Navigator 2022

Affiliations & memberships

CURE Strategic Alliance Partner 2022

Kidney Cancer Impact Alliance 2022

International Kidney Cancer Coalition 2022

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Estimated number of funding dollars secured for the sector

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

In 2016, Congress allocated $0 in congressional funding dedicated to kidney cancer research. Through the power of advocacy, we have raised that number to $135 million in five years.

Number of meetings with policymakers or candidates

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Kidney cancer advocates meet in-person (or virtually) with their representatives and Congressional staff to ask for research funding.

Number of advocates attending Congressional meetings

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our advocates meet with their Congressional representatives to ask for continued funding of lifesaving research for kidney cancer patients.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Our mission is to accelerate cures for kidney cancer by advocating for government and industry funding, facilitating collaboration across research and clinical disciplines, offering direct financial support for researchers with promising ideas, engaging the patients and caregivers through educational outreach, and
connecting patients with trial and treatment opportunities.

ADVOCACY: Strengthen advocacy to urge Congress to continue to fund kidney cancer research
• Engage and educate policymakers on the urgency of kidney cancer research funding
• Increase CDMRP Kidney Cancer Research Program and NIH funding through advocacy
• Continuously recruit advocates and grow grassroots army representing all 50 states
• Continue to strengthen partnerships with kidney cancer affiliate organizations

RESEARCH: Propel collaboration and progress in kidney cancer research
• Continuously strengthen and promote the annual Kidney Cancer Research Summit (KCRS)
• Continue to grow the community of kidney cancer researchers
• Continuously build new relationships and strengthen existing relationships with industry partners
• Provide direct funding to promising ideas through research grants

EDUCATION: Provide educational resources to patients and caregivers
• Continuously update the patient resource center on the website
• Support the development of new treatments by educating patients on trial access and enrollment
• Identify and address unmet needs for patients and caregivers through interaction/feedback from patient forums, social media platforms, and general patient engagement
• Continue to expand our digital footprint through new marketing initiatives to educate patients, caregivers, and providers (KidneyCANDID, quarterly Newsletter, and Town Hall events)

KidneyCAN is a grassroots organization created by people whose lives have been directly impacted by kidney cancer. Our members are patients, caregivers, and volunteers who bring passion and personal motivation to the cause. We have strong leadership, a dedicated staff, and knowledgeable volunteers who all have a shared mission: accelerating cures for kidney cancer. We use innovative technology to empower our advocates to share their voices. We leverage all of these tools to be the leader in legislative advocacy to drive funding for kidney cancer research.

Kidney cancer research is terribly underfunded, particularly given the prevalence of kidney cancer and its impact on people’s lives. Making progress toward cures requires advocacy. KidneyCAN advocates for awareness, funding, research and cures. We know that awareness of kidney cancer leads to a sense of urgency, a desire for solutions. Awareness leads to advocacy, and advocacy — joining to speak as one voice — leads to funding and research. That’s how we get to cures. We are committed to advancing kidney cancer research by speaking up for the kidney cancer community. When legislators and organizers meet on Capitol Hill to discuss funding, we make sure kidney cancer gets a seat at the table. Advocacy work is an all-hands-on-deck endeavor.

KidneyCAN is dedicated to accelerating kidney cancer research. We offer opportunities for researchers to network and advocate. Our advocacy for the CDMRP Kidney Cancer Research Program (KCRP) has resulted in Congressional appropriations of $185 million for kidney cancer research in fiscal years 2017-2021. (In 2016, this number was $0.) We help researchers get funding and connect with other researchers to keep progress moving.
In 2019, we hosted the first-ever Kidney Cancer Research Summit to bring translational researchers in kidney cancer together in an annual collaborative meeting. In 2020, KCRS reached a global audience of over 800 registrants, and we were excited to have kept this momentum growing with our most successful summit – KCRS21 held on October 7-8, 2021. KCRS22 is scheduled for October 6-7, 2022.

KidneyCAN provides patient education and support. We are building a patient resource center on our website, in addition to the direct outreach offered via social media, patient forums, and our special events. A few times a year, we gather our community for a Town Hall discussion. We invite prominent doctors and research leaders, as well as experienced patients and caregivers, to share news to help others. Topics vary, but connecting patients directly to experts is powerful.


How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    KidneyCAN shares our mission of accelerating cures with many stakeholders from across the kidney cancer community. We aim to serve kidney cancer patients, caregivers, families, friends, advocates, researchers, clinicians, and other stakeholders.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Modified our patient resource center to include an interactive map to easily find comprehensive cancer centers by state, region, city. Modified some of our video content to be more patient centric.

  • With whom is the organization sharing feedback?

    Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    KidneyCAN is a patient-created and patient-driven movement, drawing energy and motivation from people all over the United States and the world whose lives are impacted by kidney cancer. Our patient volunteers are involved in almost every KidneyCAN initiative including our legislative Advocacy Days events, Town Hall series, KidneyCANdid YouTube project, Patient Resource Center, and our annual Kidney Cancer Research Summit.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection,

Financials

Kidney Cancer Coalition, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Kidney Cancer Coalition, Inc.

Board of directors
as of 07/07/2022
SOURCE: Self-reported by organization
Board chair

Brenda Knapp

JOLENE JARRELL-MEADOWS

GLENN HOSKIN

STEVEN ZEIGER

TONI CHOUEIRI

HOWARD MCCLURD

Michael Sims

Bryan Lewis

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 7/6/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 07/07/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.