Educating Congress Virtually This Week!

September 15, 2020, 12:50pm EDT

As the COVID-19 pandemic continues to have enormous impacts on our nation especially kidney patients, and the presidential election approaches, this is an ideal time for kidney patients, caregivers, living kidney donors and practitioners to make Congress aware of the needs of our kidney community.

With this in mind, the National Kidney Foundation (NKF) is virtually hosting more than 150 advocates, joined by the PKD Foundation, Alport Syndrome Foundation, and IGA Nephropathy Foundation, as part of its rescheduled annual Kidney Patient Summit on September 15th and 16th. At the two-day Summit, advocates will be:

  1. Briefed on how to best tell their personal stories to help convey urgency for our legislative asks, meet with their legislators and staff, and build lasting relationships with them;
  2. Meet other advocates from across the country to share stories, excitement and achievements; and
  3. Educate their elected officials and staff about kidney disease and three important kidney reforms – 1) the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (S. 3353/H.R. 5534), 2) the need for greater funding of kidney disease research and programs, including the Kidney Risk Campaign, and 3) the Living Donor Protection Act (S. 511/H.R. 1224).

NKF is also excited to be joined by actor, activist, and entrepreneur Wilmer Valderrama at our virtual Congressional briefing: “Kidney Health in the Hispanic Community: Are You The 33%?” This briefing will discuss some of the reasons that Hispanic or Latino people are more than 1.3 times as likely as non-Hispanics or Latinos to develop kidney disease and Wilmer will be joined by 33-year kidney transplant recipient and Kidney Advocacy Committee member Maria Grijalva as well as Dr. Silvia Rosas, MD, MSCE, nephrologist and epidemiologist at the Joslin Diabetes Center and the Beth Israel Deaconess Hospital in Boston, MA, Director of the Latino Kidney Clinic at Joslin Diabetes Center and Associate Professor of Medicine at Harvard Medical School.

Before you click to read more about the virtual Kidney Patient Summit, read these testimonials from patients, caregivers and living organ donors about the Summit and what it means to them. Interested in joining us next year? Apply to become one of NKF’s patient and practitioner advocates today!

This will be my first time attending the NKF Kidney Patient Summit and I could not be more excited! I am looking forward to learning more about the issues that surround legislation reform and to brainstorming new ways to engage potential organ donors. Beyond that, I'd love to meet the other advocates from around the country who feel as passionately about kidney health education as I do.

-Tyche Nettingham, CA

When I saw that this year’s Kidney Patient Summit was going to be a virtual event, I was very excited. I have not yet been able to attend when it has been held in Washington DC, but a virtual event opens up new opportunities, and I’m planning on taking part this year for the first time!

I am passionate about being a kidney advocate and have a particular interest in protecting living donors; increasing registration for deceased organ, tissue and eye donation; and in getting Medicare to expand coverage for immunosuppressive drugs to all transplant recipients. My advocacy is a way of thanking the living kidney donors for my brother and me, and in recognition of my sister’s deceased donor and family. I hope to learn from fellow attendees about effective advocacy strategies – especially when it comes to contacting members of Congress that represent districts where we don’t currently have KAC members.

-Sara Hicklin, WI

I have kidney disease, improved by having a 33-years-long\transplant. I was given this new energy and I am using it to the fullest for others who cannot and had not been able to voice for themselves. Luckily, we now have many joining forces for the same cause - protecting kidney patients.

My few words are words that I hope will be heard by legislators during these virtual summit meetings! My drive is to provide improvements in the care of kidney patients, increased coverage of transplant medications past the 36 months currently covered by Medicare, and to give guidance and insights into our lives living with kidney disease to policymakers who are unaware of the change we needed.

-Maria Grijalva

Each year, the Kidney Patient Summit is an opportunity to reinforce old friendships and build new ones. It is a time to reflect, listen and remind ourselves why the fight for kidney disease is so important. Stories of challenging journeys from other advocates who have struggles with a disease that takes so much of our quality of life and for many of our advocates, their lives. But from those challenges, we build strength and courage to bring the voices of many, to those who can make a policy change so that actually changes actually occur for those suffering from kidney disease.

-Dave Sultzer

I’m excited to attend this year’s virtual Kidney Patient Summit in September. I’ve never attended a kidney patient summit, in-person or virtually, so this will definitely be a new experience for me.

I’m looking forward to a couple of things during the two days. First, I still feel new, uneasy, and unsure of myself in the role of a kidney advocate, so connecting with fellow advocates I think will be helpful. I know there will be plenty of people participating in the Summit who can provide tips and tricks of the trade when it comes to advocating on behalf of myself and all kidney patients. Also, I’m looking forward to learning more about the various legislative issues that are important to NKF, and how I, as a kidney advocate, can best work with members of Congress to be successful in getting important and meaningful legislation passed.

-Elizabeth Fortune

It’s an honor to participate as an advocate in the 2020 Kidney Patient Summit. I do so on behalf of my mother, Tina, who suffered from kidney disease and for others who need a voice. The Summit provides an avenue for advocates to work together and towards a common goal. As advocates, we have an opportunity to initiate policy changes by providing information and personal experience on our kidney disease priorities to our legislators.

As my mother’s caretaker, I understand the issues she experienced living with kidney disease and the ones our family experienced as a result of her illness. Through the Summit training, I hope to receive feedback that will enhance the delivery of my message and additional resources that will assist me in patient advocacy. I’m looking forward to networking and exchanging best practices with other advocates with the goal of enhancing the lives of individuals living with kidney disease.

-Roxana Haferbier

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