KidneyCAN Advocates for Research Funding: Here’s Why

You might not realize how important it is for the kidney cancer community to advocate in order to make progress.

What are we advocating for? Awareness? Funding? Research? Cures?

The answer is — we are advocating for all of those things. We know that awareness of kidney cancer and its impact on many lives 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.

District Days: Advocating for Kidney Cancer Research Funding from Home

On August 12-13, 2020, KidneyCAN organized our first District Days. 122 advocates from 29 states participated in 115 conference call meetings during this remote Hill Day. The KidneyCAN team designed, marketed, promoted, and operated the 2 day event for stakeholders in the kidney cancer community. Our partnering organizations included Joey’s Wings, Judy Nicholson Kidney Cancer Foundation (JNKCF), National Kidney Foundation (NKF), and VHL Alliance. The purpose of the event was as follows:

  • To Draw Attention to & Build Awareness of kidney cancer.
  • To Educate Policymakers (and staff) of the impact of kidney cancer on individuals, caregivers, families and other stakeholders.
  • To Speak as One Voice for the kidney cancer community.
  • To Thank Representatives for supporting issues impacting the community and to have a clearly articulated “ask” of legislators based on the legislative priorities of the kidney cancer community.
  • To Represent multiple stakeholder constituencies from multiple states.
District Day Delagte Megan C
READ MORE ABout District Days

Lifting Our Voices: Advocacy Days in D.C.

On March 9-10, 2020, we met with congressional representatives to advocate for increased funding of kidney cancer research. These advocacy days make an enormous impact that benefits kidney cancer patients and their families.

Members of our group learned about current research and the state of kidney cancer funding. They shared their stories as patients and caregivers and explained the need for additional lifesaving research.

You can read all about our advocacy day here. We hope you’ll join us for future advocacy endeavors, as it takes all of us speaking up to be heard. You don’t need previous advocacy experience. We will provide you with all the information and support you need. Just come tell your story!

KidneyCAN advocates in DC

Hear from Our Advocacy Day Delegates

Delegates from our March 2020 advocacy days share their goals, experiences, and reasons for participating.

Raise Your Voice

We are the voice of kidney cancer advocacy in Washington, D.C. and the U.S.

Advocacy means the act or process of supporting a cause or proposal. Advocacy works to influence the introduction, enactment, or modification of legislation, for causes related to kidney cancer. Advocacy can occur at the Federal or State level.  From time to time, KidneyCAN asks you to raise your voice on behalf of kidney cancer patients and their families. This may entail contacting your legislator, sharing your kidney cancer experience and asking him or her to vote a specific way on a bill. 

Are you willing to you help KidneyCAN advocate on behalf of the kidney cancer community? Maybe you could visit your representatives in D.C. with us? Perhaps you could write a letter, or send an e-mail? 

We welcome you and your advocacy. With relentless devotion to our vision and our shared resources, we will achieve lasting legacies.

Click  HERE to sign up for Advocacy alerts and announcements of key federal and state issues important to our kidney cancer community.

WHAT WE’RE DOING

    • Congressional meetings (in district and in D.C.)
    • Advocacy days  – Capitol Hill
    • Congressional briefings
    • Congressional letters
    • Agency meetings (FDA, NIH/NCI, CDC)
    • Consortium involvement and engagement (AUA, OVAC, DHRC, AACR, ASCO, SBUR)
    • Sponsor Stakeholder meetings – “Connect, Network and Advocate” Attendees include patients, caregivers, physicians, hospitals, industry/pharma
    • State leadership activities – Identify, train, activate state ‘grass top’ leaders and advocates
    • Registry – database development of grassroots advocates
    • Public relations/media outreach

HOW WE’RE DOING IT

    • Engaging stakeholders in Washington
    • Mobilizing the community
    • Leveraging resources to achieve the vision of a cure
    • Increased research funding for National Institutes of Health  – NIH/NCI
    • Increased research funding via the CDMRP
    • CDC funding for kidney cancer awareness and future screening funding
    • Congressional information resource

“Kidney cancer is the ideal sandbox for these new approaches, and without a doubt the same approach can, should and will be suitable for other cancers”

JOIN OUR COMMUNITY