2020 Summit Social Media Toolkit

Welcome, kidney advocates! This toolkit will help you extend your advocacy outreach using social media during the 2020 Kidney Patient Summit.

This year’s Summit theme, “Advocates Creating Change,” aims to influence the Capitol Hill to act on behalf of the 37 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 7th 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.

Appropriations:

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_advocacy @AlportSyndFndn @PKDFoundation @IGANFoundation
  3. Whenever appropriate, tag your lawmakers in your tweets, especially tweets that thank their offices for meeting with you.
  4. The text of your tweet must be under 280 characters. Twitter’s character limit excludesspace 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 virtual visits with lawmakers! Be sure to get their permission first.
  6. If there’s room, 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)”)
    • You can also do the same with a sign saying “I advocate because…”
    • You can also address how COVID-19 has affected your life as a kidney patient.
  1. In the weeks leading up to the Summit, tweet at your legislators that you are excited to speak with them about the issue that is so important to you. Feel free to include any of these facts:
    • Kidney disease affects 37 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_advocacy Kidney Patient Summit & meet w/ @[YourREP/SEN]. (First Name, Hometown)   #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) #MyKidneysMyLife
  • Kidneys are essential to sustaining life. I’m headed to DC to tell @[YourREP/SEN] at @NKF_advocacy’s Patient Summit: #MyKidneysMyLife – (First Name, Hometown)

Actor, activist, and entrepreneur Wilmer Valderrama will be joining us on Wednesday, September 16 from 12:30-1:30pm EDT for a Virtual Congressional Briefing on Kidney Health in the Hispanic Community: Are You the 33%?. Please use the following sample tweets to encourage people to watch:

Sample Tweets During the Summit
  • I’m speaking with @[YourREP/SEN] to advocate for [YOUR CAUSE]  #MyKidneysMyLife
  • Looking forward to meeting @[YourREP/SEN] at @NKF’s Kidney Patient Summit and advocate on behalf of the 37 million people with kidney disease.   #MyKidneysMyLife
  • I’m joining kidney advocates from across the country for the 2020 @NKF Kidney Patient Summit! #MyKidneysMyLife
  • We need more funding to put an end to kidney disease. That’s why I’m joining advocates from across the country to talk with @[YourREP/SEN] and ask [him/her] to act on behalf of the 37 million people with #kidneydisease.  #MyKidneysMyLife
  • I’m working virtually with patient advocates from across the country to tell Washington to better support kidney patients. Can we count on you, @[YourREP/SEN]? #MyKidneysMyLife
  • I urge @[YourREP/SEN] to improve early detection & care for people with kidney disease.#MyKidneysMyLife
  • I urge @[YourREP/SEN] to pass [YOUR CAUSE]. #MyKidneysMyLife
  • Thank you @[YourREP/SEN] for agreeing to follow-up on [ISSUE] #MyKidneysMyLife
Facebook Tips
  1. Post screenshots and videos of your screen during 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. 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 kidney patient advocates from across the country for the National Kidney Foundation’s 2020 Kidney Patient Summit. While we are going virtual this year, I’m excited to speak with @[YourREP/SEN]and urge [him/her] to support legislation that improves early detection, care and outcomes for people with chronic kidney disease. #MyKidneysMyLife
  2. I’m virtually joining kidney patient advocates from across the country for the National Kidney Foundation’s 2020 Kidney Patient Summit! I will be speaking with @[YourREP/SEN]to tell [him/her] that kidney disease should be a national priority.  #MyKidneysMyLife
Sample Facebook posts during the summit
  1. I’m speaking with @[YourREP/SEN] to advocate for [YOUR CAUSE] #MyKidneysMyLife
  2. Looking forward to speaking with @[YourREP/SEN] at the National Kidney Foundation Kidney Patient Summit and advocate on behalf of the 37 million people with kidney disease.   #MyKidneysMyLife
  3. I’m joining kidney advocates from across the country for the 2020 National Kidney Foundation Kidney Patient Summit!  #MyKidneysMyLife
  4. We need more funding to put an end to kidney disease. That’s why I’m joining advocates from across the country to talk with @[YourREP/SEN] and ask [him/her] to act on behalf of the 37 million people with kidney disease.  #MyKidneysMyLife
  5. I’m working virtually with patient advocates from across the country to tell Washington to better support kidney patients. Can we count on you, @[YourREP/SEN]? #MyKidneysMyLife
  6. I urge @[YourREP/SEN] to improve early detection & care for people with kidney disease. #MyKidneysMyLife
  7. I urge @[YourREP/SEN] to pass [YOUR CAUSE].  #MyKidneysMyLife
  8. Thank you @[YourREP/SEN] for agreeing to follow-up on [ISSUE] #MyKidneysMyLife
Images

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: 

Instagram: 

Photo and Video Tips

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

  • We encourage you to take screenshots and/or videos of your desktop when participating in advocacy events.If you don’t already have software which can do this, there are free versions such as https://tinytake.com/.
    • Make sure your lawmakers provide permission to take and share photos or video of your meeting.
    • Before or after the meeting, write a short advocacy message on a piece of paper and take a photo while holding the paper. Keep your message short and simple.
    • You can always record yourself speaking about the event with your phone. Here are some sample questions you can answer in your video:
        • Why did you decide to become an advocate?
        • What issues are important for you?
        • What do you want lawmakers to know about kidney care?
        • How has COVID-19 affected you as a kidney patient?
    • Be sure to use full sentences (“Today I will be speaking with (representative) to raise awareness about kidney disease and the importance of early detection.”)
  • 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.