2017 Summit Social Media Toolkit

Welcome, kidney advocates! This toolkit will help you extend your advocacy outreach using social media during the 2017 Kidney Patient Summit.

This year’s Summit theme, “My Kidneys, My Life,” aims to send a strong message to the lawmakers that kidneys are vital organs that sustain life. Help make it a success by using social media to garner attention from lawmakers and the public.

Hashtag: #MyKidneysMyLife

Use the hashtag #MyKidneysMyLife with all your social media activity during the Summit to help us build awareness around the hashtag, and track responses and outreach to government officials.

Message Points

The following are three actionable items we’ll be asking the lawmakers for. Use these message points in your social media activity.

Improve Chronic Kidney Disease (CKD) Care:

Accurate and timely diagnosis of chronic kidney disease saves lives and reduces healthcare costs.  Serve as an original co-sponsor on imminent legislation that seeks to establish a pilot program to help improve care, and outcomes, for patients with CKD.

Living Donor Protection Act (H.R. 1270):

Prohibit discrimination in the availability, coverage limit, or price of life, disability or long-term care insurance for living donors and add living donation to the Family and Medical Leave Act (FMLA).


Increase Fiscal Year 2017 funding for the Center for Disease Control’s (CDC) Chronic Kidney Disease Program, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Health Resources and Services Administration’s (HRSA) Division of Transplantation (DoT).

Twitter Tips
  1. Follow each of your lawmakers on Twitter. Find your legislators’ social media handles.
  2. Follow all participating organizations, including @NKF @AlportSyndFndn @KidneyPatients @NephCure @PKDFoundation @HomeDialyzors
  3. Whenever appropriate, tag your lawmakers in your tweets, especially tweets that thank them for allowing a visit with you.
  4. The text of your tweet must be under 140 characters. New: Twitter’s character limit now excludes space for link and/or photo, so you can add those freely even after the character count of your tweet has reached 140.
  5. Add photos and videos of your visits with lawmakers!
Sample Tweets Before The Summit

1. Take a photo of yourself holding a sign that answers the following question: How did kidney disease affect/change your life? (Example: “I have been waiting 5 years for a lifesaving kidney transplant.”)

2. Starting the week of February 20, tweet the photo at your legislator using the hashtag #MyKidneysMyLife in the weeks before the Summit and tie it to one of the below statistics:

  • Over 660,000 Americans have irreversible kidney disease.
  • Over 89,000 people with kidney failure die each year.
  • Over 100,000 Americans are waiting for a kidney transplant.
  • Over 19,000 Americans received a kidney transplant in 2016.
  • Over 5,600 of Americans received a kidney transplant from a living donor in 2015.


Or use a state-specific state from the fact sheets on our web site:

3. Use these the following additional tweets:

Sample Tweets During the Summit
Facebook Tips
  • Post photos and videos from the Summit to your Facebook wall.
  • When sharing to your own wall, tag your lawmakers in the post by using the “@” symbol before typing their name (or the name of their Facebook page).
  • Post photos and videos to the Facebook walls of your lawmakers when applicable.
Sample Facebook posts before the summit
  1. Looking forward to joining 100 kidney patient advocates for the National Kidney Foundation’s Kidney Patient Summit 2017 and meeting @[YourREP/SEN] to urge members of Congress to support specific legislative priorities that seek to improve early detection, care and outcomes for people with chronic kidney disease. http://bit.ly/2lsTJjE #MyKidneysMyLife
  2. I’m on my way to Washington, D.C., for the National Kidney Foundation’s Kidney Patient Summit 2017! I will be sitting down with @[YourREP/SEN] to tell him/her that kidney disease should be a national priority. http://bit.ly/2lsTJjE #MyKidneysMyLife
Sample Facebook posts during the summit
  1. I’m in Washington, D.C., this week to push @[YourREP/SEN] on kidney disease funding initiatives. If you don’t know why this is so important to me, [INSERT PERSONAL STORY]. You can also help by becoming a kidney disease advocate: http://bit.ly/2lsTJjE #MyKidneysMyLife
  2. I’m in Washington, D.C., with nearly 150 kidney advocates to challenge Congress to tackle kidney disease! Find out more about this important initiative. http://bit.ly/2lsTJjE #MyKidneysMyLife [INCLUDE GROUP PHOTO OF ALL ADVOCATES]
  3. March is National Kidney Month and I am honored to help raise awareness about kidney disease at the National Kidney Foundation’s annual Kidney Patient Summit in Washington, D.C. Coming to the Kidney Patient Summit is personal to me. I want to be heard and affect change for those suffering from kidney disease. http://bit.ly/2lsTJjE #MyKidneysMyLife
  4. I’m ready to meet with @[YourREP/SEN] to discuss kidney disease research priorities during the http://bit.ly/2lsTJjE #MyKidneysMyLife [INCLUDE PHOTO]
  5. Thank you @[YourREP/SEN] for agreeing to talk about [YOUR ISSUE] during our meeting at the National Kidney Foundation’s Kidney Patient Summit. http://bit.ly/2lsTJjE #MyKidneysMyLife

It’s best to use your own photos and video in your social media activity. If you need an additional supporting image, you may download the one below.

Photo and Video Tips

We encourage you to take photos or videos with your smartphone when participating in advocacy events.

  • Ask your lawmaker for permission to take and share photos or video of your meeting.
  • Assign someone to snap action photos during your meeting.
  • Ask your lawmaker to pose for a photo after the meeting.
  • Take a photo in front of the Capitol.
  • Take a photo with a group of advocates.
  • Take a photo outside the door of your Member’s office next to their name plate and state flag.
  • Write a short advocacy message on a piece of paper and take a photo while holding the paper.
  • Try to record videos in quiet, well-lit areas and be aware of your surroundings.
  • Keep your message short and simple.
  • Here are some sample questions you can answer in your video:

Why did you decide to become an advocate?

What brings you to Capitol Hill today?

What do you want lawmakers to know about kidney care?

Describe your visit with your lawmaker.

  • Be sure to use full sentences (“Today I am at the Capitol to raise awareness about kidney disease and the importance of early detection.”)
  • Try to encourage your lawmaker’s participation in the video. This will increase the chances that his/her office will share the video with constituents.
  • If your lawmaker cannot be part of the video, be sure to include their name (s) in your video message.