Monday, June 29, 2020
WHAT is the National Day of Action?
A day to ask members of Congress to support issues important to the scleroderma community.
WHEN is the National Day of Action?
Monday, June 29, 2020. Efforts will be ongoing across the country all day. Your participation is based on your schedule and which advocacy activities you chose to do.
WHO can participate in the National Day of Action?
Anyone can participate.
HOW can I participate?
Contact your U.S. Senators and U.S. Representative and ask them to co-sponsor legislation important to people with scleroderma. Specifically in the Senate, bill S. 2477, and in the House, bill H.R. 3446.
WHAT do I do?
Download the prep packet, which contains a sample phone script and sample email to use when communicating with your U.S Senators and U.S. Representative. Find your Senators. Find your Representative.
What is the GOAL of the National Day of Action?
Ultimately, our goal is to find a cure for scleroderma with ongoing and increased research funding. Each meeting—each conversation—raises awareness about scleroderma and how it affects people.
What is the time commitment?
Your commitment can be a few minutes to send an email. If you choose to make calls or participate in a virtual meeting with an elected official’s office, it may take up to 30-45 minutes.
Is the Scleroderma Foundation asking people to take a political stand on certain issues?
Our advocacy efforts are not politically motivated. In fact, the issues we need members of Congress to cosponsor have bipartisan support from Republicans and Democrats. The bills are budget neutral, which means they will not cost the government a dime to implement.
How can I learn more about the issues to be well prepared?
Watch the training webinar posted at the top of this page. Download and read the sample email and phone script to guide your interaction with legislators. Review the tips below.
TOOLS TO HELP YOU PREPARE:
- Tips for Being an Effective Advocate (DOs and DON’Ts)
- Learn more about H.R. 3446 (House bill) and S. 2477 (Senate bill).
- Issue briefs:
- Bill co-sponsorship for H.R. 3446 an S. 2477
- Include scleroderma in the Department of Defense budget
- National Institutes of Health (NIH) funding
- My Scleroderma Story – a self-guided resource to help you create impactful talking points unique to your experience as someone who has scleroderma, a caregiver, family member or friend.
- Find your U.S. Representative
- Find your U.S. Senators
- School House Rock – I’m Just a Bill – how a bill becomes law
- Scleroderma Aware – an annual joint initiative of the Scleroderma Foundation, Scleroderma Canada and the Scleroderma Research Foundation to raise awareness of scleroderma around the world.
- Voices of Patient Advocates – closing keynote session of the 2018 national conference featuring several Capitol Hill Day 2018 advocates. Hear them share what it means to be a scleroderma advocate.
ADDITIONAL RESOURCES (more in-depth for those who want a deeper dive):
- Rare Disease Caucus – check the list to see if your Representative or Senator is a member of the caucus.