2019 Summit Social Media Toolkit

Welcome, kidney advocates! This toolkit will help you extend your advocacy outreach using social media during the 2019 Kidney Patient Summit.

This year’s Summit theme, “Inspiring Action for Kidney Disease,” aims to influence the Capitol Hill to act on behalf of the 30 million people living with kidney disease. Our hashtag, #MyKidneysMyLife,  sends a strong message 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.


Not joining us as an advocate at the 6th Annual Kidney Patient Summit?  Join our advocates in inspiring change by asking your friends and family to join you in writing your legislators about kidney disease.

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.

Living Donor Protection Act:

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).

Extending Medicare coverage for Immunosuppressive Medication:
Transplant recipients need these drugs to maintain their kidney and lower risk of rejection. Medicare covers immunosuppressants for only 36 months post-transplant, leaving many recipients struggling to find affordable coverage. Extending Medicare coverage for immunosuppressive medications indefinitely ensures patients have access to these lifesaving medications.


Increase funding in Fiscal Year 2020 for: CDC’s Division of Diabetes Translation’s (DDT) CKD Surveillance Project; the Health Resources and Services
Administration’s (HRSA) Division of Transplantation and Bureau of Primary Care; the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); and KidneyX, the Kidney Innovation Accelerator.

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 @PKDFoundation
  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 280 characters. Twitter’s character limit excludes space for link and/or photo, so you can add those freely even after the character count of your tweet has reached 280.
  5. Add photos and videos of your visits with lawmakers!
  6. Be sure to write your hometown at the end of your Tweet so they know you are a constituent!
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. (First Name, Hometown)”)

2. Starting the week of February 25th, tweet the photo at your legislator using the hashtag #MyKidneysMyLife in the weeks before the Summit and tie it to one of the below national statistics or state statistics found on your state’s fact sheet:

  • Kidney disease affects 30 million people in the U.S. (15% of the adult population) and, approximately 90% of those with kidney disease don’t even know they have it.
  • 1 in 3 American adults is at risk for kidney disease.
  • Approximately 1 in 3 adults with diabetes and 1 in 5 adults with high blood pressure may have chronic kidney disease.
  • More than 725,000 Americans have irreversible kidney failure, or end-stage renal disease (ESRD), and need dialysis or a kidney transplant to survive.
  • More than 511,000 ESRD patients receive dialysis at least 3 times per week to replace kidney function.
  • Nearly 100,000 people with kidney failure died of CKD in 2015.
    95,000 Americans are waiting on a kidney transplant right now but only 19,000 will receive one this year.
  • Only 6,400 of Americans received a kidney transplant from a living donor in 2018.
  • It costs approximately $114 billion in annual Medicare spending for all people with CKD.

3. Use these the following additional tweets:

  • I’m excited to join 100 kidney patient advocates @NKF Kidney Patient Summit & meet w/ @[YourREP/SEN](First Name, Hometown)  https://bit.ly/2tr5xoC #MyKidneysMyLife
  • I’m on my way to DC to inspire @[YourREP/SEN] and others to act on behalf of the 30 million people with kidney disease. (First Name, Hometown) https://bit.ly/2tr5xoC #MyKidneysMyLife
  • Kidneys are essential to sustaining life. I’m headed to DC to tell @[YourREP/SEN] at @NKF’s Patient Summit: #MyKidneysMyLife – (First Name, Hometown) https://bit.ly/2tr5xoC

10 year-old singing sensation and America’s Got Talent runner up Angelica Hale will be joining us at the Summit this year! She will be part of two Facebook Live events that will include an interview with the members of Congress and a live performance from the evening reception. Please use the following sample tweets to thank Angelica for joining us and advocating on behalf of kidney patients.


  • The talented @AngelicaHale who is a kidney transplant recipient and an @AGT runner up will join me and other advocates on Capitol Hill next week. #MyKidneysMyLife
  • Excited to see @AngelicaHale’s performance at the 2019 Kidney Patient Summit on March 5th! This talented 10-year-old will also meet with lawmakers to advocate on behalf of kidney patients. #MyKidneysMyLife
Sample Tweets During the Summit
  • I’m in DC to meet with @[YourREP/SEN] to advocate for [YOUR CAUSE] https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • Looking forward to meeting @[YourREP/SEN] at @NKF’s Kidney Patient Summit and advocate on behalf of the 30 million people with kidney disease. https://bit.ly/2tr5xoC  #MyKidneysMyLife – (First Name, Hometown)
  • .@[YourREP/SEN] We’re taking over Capitol Hill at @NKF Kidney Patient Summit 2019 and inspiring change for kidney disease.  https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • .@[YourREP/SEN] I’m joining 100+ kidney advocates this week for @NKF Kidney Patient Summit 2019! https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • We need more funding to put an end to kidney disease. That’s why I’m in DC to talk with @[YourREP/SEN] and ask [him/her] to act on behalf of the 30 million people with #kidneydisease. https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • Working with 100+ kidney advocates to push Washington to pay attention to kidney patients @[YourREP/SEN]. [photo] https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • I urge @[YourREP/SEN] to improve early detection & care for people with kidney disease. https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  • Thank you @[YourREP/SEN] for agreeing to follow-up on [ISSUE] @NKF #MyKidneysMyLife – (First Name, Hometown)
Facebook Tips
  1. Post photos and videos from the Summit to your Facebook wall.
  2. 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).
  3. Post photos and videos to the Facebook walls of your lawmakers when applicable.
  4. Be sure to write your hometown at the end of your post so they know you are a constituent!
Sample Facebook posts before the summit
  1. Looking forward to joining 100 kidney patient advocates for the National Kidney Foundation’s 2019 Kidney Patient Summit 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/2DMVZaR #MyKidneysMyLife – (First Name, Hometown)
  2. I’m on my way to Washington, D.C., for the National Kidney Foundation’s 2019 Kidney Patient Summit! I will be sitting down with @[YourREP/SEN] to tell him/her that kidney disease should be a national priority. http://bit.ly/2DMVZaR #MyKidneysMyLife – (First Name, Hometown)
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: https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  2. @[YourREP/SEN] I’m in Washington, D.C. with nearly 100 kidney advocates to challenge Congress to tackle kidney disease! Find out more about this important initiative. https://bit.ly/2tr5xoC #MyKidneysMyLife  – (First Name, Hometown)  Note: [INCLUDE GROUP PHOTO OF ALL ADVOCATES]
  3. @[YourREP/SEN] 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 for me. I want to be heard and affect change for those suffering from kidney disease. https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)
  4. I’m ready to meet with @[YourREP/SEN] to discuss kidney disease research priorities during the https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)  Note: [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. https://bit.ly/2tr5xoC #MyKidneysMyLife – (First Name, Hometown)

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.

Twitter and Facebook: 


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.
  • 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.