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Advocate Resources

TAKE ACTION

Congress designated $5 million exclusively for scleroderma research for the first time in 2020 and again in 2021. This research funding only happened because people across the country whose lives and families are adversely affected by this disease asked their member of Congress to support this funding.

We need Congress to approve scleroderma research funding for 2022, and your voice can help make this happen again. In recognition of Rare Disease Day (February 28, 2021), please take a few minutes to share this message with your U.S. Senators and Representative. Here’s how:

  • Email your members of Congress and ask them to support scleroderma research funding for fiscal year 2022. Click HERE to find a message that you can copy and paste into an email with your contact information.
  • To find your Representative’s email address, click HERE. After entering your ZIP Code, your Representative’s email address may be provided. You may be directed to an online form to complete.
  • To find your Senators’ email addresses, click HERE. Look for Find Your Senators in the top banner and navigate to individual sites from there. An email address or online submission form vary by Senator.

Please share this information with friends and family. The more people who make this important ask, the “louder” our message will be. Please add your voice today.

GRASSROOTS ADVOCACY TRAINING
(Recorded Videos)

Webinar 1: Grassroots Advocacy Overview (10/23/17)

  • Vision, Mission and Goals
  • Equipping Advocates through Grassroots Efforts
  • Spreading the Word

Webinar 2: Preparing and Sharing your Elevator Speech (11/27/17)

  • Preparing your Elevator Speech
  • Opportunities/Missed Opportunities
  • Teachable Moments
  • Examples

Webinar 3: Using Your Voice to Advance Research and Improve Care: Tips for Effective Advocacy and Congressional Outreach (12/11/17)

  • Presented by Philip Goglas II and Dane Christiansen of Health & Medicine Counsel of Washington (HMCW)

Webinar 4: Effective Public Speaking (1/22/18)

  • Gestures and Body Language
  • Speaking to Diverse Audiences
  • Visual Aids and Props
  • Talking to Elected Officials

Webinar 5: Using Your Voice to Meet with an Elected Official (2/26/18)

  • Sit in on a mock meeting that's just like the ones patient advocates have in the offices of Congress members. This small group of advocates will likely include a patient who had undergone stem cell therapy, a parent or caregiver of a child with scleroderma, a patient who uses a medical device and an advocate who works in a chapter. Excellent opportunity to see what the day is all about.

 


CONTACT:  David Murad, Director or Chapter Relations, with questions or for more information. Additional resources are below to assist you in your advocacy activities:

An Online Guide to the Legislative Process >>

Tips to Talk to Elected Officials >>