2021 Spring Advocacy Days: “A Matter of Saving and Improving Lives”

On March 8-9, KidneyCAN organized its 4th Spring Advocacy Days. The event was an incredible success, with delegates from all over the United States speaking to Congress about funding kidney cancer research.

On Advocacy Days, our goals are:

SPEAK WITH ONE VOICE – The kidney cancer community speaks as one voice to have a clearly articulated “ask” of legislators based on our legislative priorities.

REPRESENT MULTIPLE STATES – We aim to represent the national kidney cancer community, to speak for those unable to speak or be present.

RAISE AWARENESS – We want to build awareness of kidney cancer as a leading killer disease.

EDUCATE – We educate policymakers and staff on the impact of kidney cancer on individuals, caregivers, families, and other stakeholders.

EXPRESS THANKS – We  thank our representatives for supporting issues impacting the community.

Congressman Jim Hagedorn (MN-01) was diagnosed with stage 4 RCC in 2018. Here, he meets with delegates to discuss funding for kidney cancer research. 

We are asking for Congress to fund kidney cancer research through the Congressionally Directed Medical Research Program (CDMRP) and the Kidney Cancer Research Program (KCRP), as well as through the National Institutes of Health (NIH).

This money isn’t a given. We’ve had to fight for it, year after year. In fact, in 2016, the amount of money Congress specifically appropriated for kidney cancer research was ZERO dollars. For 2021, it was $50 million. This kind of change is the result of relentless advocacy from our grassroots army. 

We want our delegates to feel ready and supported as they meet with Congress. Prior to Advocacy Days, delegates attended an online educational seminar (“Advocacy 101”) to discuss issues impacting the kidney cancer community and to learn about our “ASKS.” The seminar included providing each delegate with a toolkit of patient advocacy resources. These tools included talking points, an advocacy script, a “leave behind” document, legislative do’s and don’ts, and common government and organizational acronyms and phrases.

Day 1 (March 8) consisted of our advocates meeting virtually with staff and members of their Senate offices; Day 2 (March 9) included our advocates meeting virtually with staff and members of their House offices. As with previous Advocacy Days, we made sure to target members of the House and Senate Appropriations Defense Subcommittees.

The ASKS of the kidney cancer community are for Congress to:

  • Maintain the $50 million currently allocated for the KCRP for FY22.
  • Increase the NIH budget by $3.2 billion increase for FY22.
  • Continue to support legislative initiatives that contribute to robust, sustainable funding for medical research.
  • Continue to listen to the patient perspective on legislative policy matters.

This two-day event was designed, marketed, promoted, and operated by KidneyCAN for all stakeholders in the kidney cancer community. As KidneyCAN President Bryan Lewis says, “A rising tide lifts all boats. I’m thankful to all the kidney cancer advocates across thecountry raising their voices.” Our partnering organizations included Driven to Cure, Chris “CJ” Johnson Foundation, Joey’s Wings, Judy Nicholson Kidney Cancer Foundation (JNKCF), Kidney Cancer Association (KCA), National Kidney Foundation (NKF), and VHL Alliance.

Our work isn’t finished. Advocacy is a continuous task, an “all hands on deck” endeavor. Please join our mailing list to become a part of our grassroots army fighting to accelerate cures for kidney cancer! We welcome patients, caregivers, family members, and medical professionals — anyone with a passion for finding a cure for kidney cancer!

Our leader in this endeavor is Deb Beyhan. If you have questions about serving as a KidneyCAN advocate, please contact Deb via email

KidneyCAN is able to do this work through the generous support of our grassroots army. Please consider donating: 

DONATE TO KIDNEYCAN

KidneyCAN’s Advocacy Wall of Heroes

KidneyCAN is proud to celebrate the following Advocacy Day delegates who have worked with our teams to communicate with legislators on behalf of the kidney cancer community. These heroes are everyday people — patients, caregivers, sons and daughters, doctors, and researchers — who have taken the time to learn about the funding process and advocate for kidney cancer research funding. 

From the whole team at KidneyCAN, we thank you for your time, your enthusiasm, and your dedication to our mission. Thank you for being part of our grassroots army. Together, we are making progress. 

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Juliana Barranco de Matos 1
Marissa Beasley 1 +
Morgaine Beck 1
Debra Beyhan 1 + * o #
Deniz Beyhan 1 + #
Erin Buran 1 +
Phyllis Chandler 1 +
Chandra Clark 1
Dawn Cockrum 1
Richard Cockrum 1
Gary Cole 1 + *
Megan Conley 1 + *
Anna Cote 1 +
Lance DeClue 1
Jenna Derr 1 +
Joann Derr 1
Jenny Dybing 1
Laura Esfeller 1
Michael Fahn 1
Toni Friedman 1
Roberta Friedman 1
John Fulkerson 1
Jennifer Galenkamp 1 + #
Alejandro Garcia 1
Jacqueline Gowdy-Allan 1 +
Debbi Harris 1 + #

Stephen Harris 1
Adrian Hayes 1
Bruce Hill 1 + *
Jason Hull 1 +
Jonathan Ji 1 +
Jorma Jokela 1
Lisa Judelson 1 +
Elizabeth Justice 1 +
Marge Karas 1
Greg Kasler 1
Terri Keeney 1 +
Brenda Knapp 1 + #
Ann Kozlowski 1 #
Adina Lasser 1
Bruce Lee 1
Heidi Leone 1 +
Tony Lesica 1
Bryan Lewis 1 + * #
Debby Linse 1 +
Kathy Liu 1 + #
Carey Lundberg 1
Benjamin Lundin 1
Joshua Mann 1
Mark Manning 1 +
Karen Mantzouranis 1 +
Karen Matesic 1

Howard McClurd 1 + *
Jordan McGuire 1
Dani Miller 1
Melissa Musman 1 + #
Rachel Musman 1 +
Abigail Musman 1 +
Jim Myers 1 +
John Nguyen 1
Kristi Nicholls 1 +
Dagmar Niebur 1 +
Susan Owens 1 +
Andrea Payne 1 +
Lucinda Peng 1
Alexia Plaza 1
Courtney Polkowski 1
Susan Poteat 1 + #
Gary Poteat 1 +
Michael Poteat 1
Marilyn Ripley 1
Peter Rooney 1 +
Kristen Ross 1 +
Mart Ruusma 1 +
Caroline Sample 1 + *
Gina Saperstein 1 +
Jennifer Schmaedeke 1
Kimberly Serota 1

Anthony Settle 1 +
Neil Shore 1 +
Mary Ann Skinnion 1
Andrew Smith 1 + # $
Adam Stern 1 !
Mark Sterne 1 + #
Cari Sterne 1 + #
Shari Stonacek 1 + #
Justin Stonacek 1
Chuck Stravin 1 +
Stephanie Suttle 1
Glenn Sykes 1
Debbie Talcott 1 +
Shauna Tate 1
Tracie Titus 1
Meryl Uranga 1 +
Margo Wiener 1
Evelyn Wilson 1
John Wilson 1 $
Mingkuan Yan 1 +
Darryla Zabransky 1
Yousef Zakharia 1 +
Jacqueline Zarro 1 + *
Peggy Zuckerman 1 + *