District Days: Do Something!

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.

“I had great experiences speaking with Rep. Delgado, Senator Gillibrand, and Senator Schumer’s offices these past two days. The staff from all three offices were engaged & genuinely interested in hearing our stories.”
– Bruce H., New York Delegate

Prior to meeting in-district with their local representatives, delegates attended an online educational seminar (Advocacy 101). This Advocacy 101 session included speakers from partner advocacy organizations, health care advocates, rehearsal/role playing, logistics, ‘how to do’ Congressional meetings and related matters. The aim of this seminar was to educate our participants to discuss issues impacting the kidney cancer community and to have a clearly articulated “ASK.” The seminar included providing each delegate with a Toolkit of patient advocacy “tools.” These tools included talking points, script, a “leave behind” document, legislative do’s and don’ts, appointment schedules, and related patient advocate materials.

Day 1 (August 12th) consisted of our advocates meeting virtually with staff and members of their local Congressional House district offices. Day 2 (August 13th) included our advocates meeting virtually with staff and members of their local Congressional Senate district offices.

 

Our Asks included:

  • $3 billion increase in funding for the NIH and NCI.
  • $50 million for the KCRP (CDMRP).
  • 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.

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Brandon Manley, M.D., is a urologic oncologist who specializes in genitourinary oncology, with a focus on patients with kidney cancer. He currently practices at Moffitt Cancer Center in Tampa, Florida, where he lives with his wife Aimee, and his two daughters Sadie and Brooklyn. The family enjoys...

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