Help make a difference nationwide

 
 

Advocacy is the best way for the MPS and ML community to share our stories with lawmakers and policy influencers who can help make a difference on a federal level. Federal policies can increase life-saving medical research and access to care for MPS patients.

Advocacy Committee

The Advocacy Committee focuses on a number of goals throughout the year, including regular reviews and calls to action regarding MPS and ML legislation, carefully crafted appropriations language, reaching and spreading our message to new members, collaborating with the rare disease community as a whole, advocacy training webinars and growing and fostering relationships with key decision-makers. To join the Advocacy Committee or for more information, contact Stephanie Bozarth.

Causes we champion:

Speakers Bureau

Our speakers bureau is a core group of speakers who have MPS or ML or are parents of those with MPS and ML and want to tell their stories. Our speakers educate the public and act as a community resource to raise MPS awareness. For more information, contact us!

Speakers Bureau Sample Letter to the Editor

Speakers Bureau Sample Press Release

Speakers Bureau Training Video

How to Tell Your Story

Supplemental Handouts for this video:

Printer-friendly slides for this presentation

How to Develop an Elevator Pitch for Your Story

 

 

Help us make a difference for MPS and ML

There are no cures for MPS and ML, and only five syndrome types have treatments. Join our network of advocates in being a voice for MPS. We’ll send you updates on legislation affecting rare diseases, and you can participate in our monthly advocacy call to hear what’s on the horizon and how you can help.

 

Advocacy pledge

I pledge to support the fight to end MPS and ML.

Federal legislative links

firstgov.gov Find out about local, state, and federal government agencies, programs and benefits.

house.gov Find your representative, keep up to date on events on the House floor, or contact your representative.

NIH.gov National Institutes of Health website. Find news, health information and links to NIH institutes, centers and offices.

senate.gov Find your senator, keep up to date on events or contact your senator.

thomas.loc.gov Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.

Support Toolkit

2018 Advocacy & Speaker Bureau Skill Building Webinar Series 

Tune in to these helpful webinars on a variety of advocacy topics. Live 15-30 minute webinars are followed by advocacy conference calls and include a one-page information sheet. Webinars and supporting documents are made available on the MPS Society website (under Advocacy Tool Kit) and YouTube channel following live launch. 

Feb. 21, 2018, 7:30 p.m. EST 
MPS Advocacy Preparation for Meeting with Your Legislator 
 
March 21, 2018, 7:30 p.m. EST 
How to Tell Your  Personal Story 
 
April 18, 2018, 7:30 p.m. EST 
Letters to the Editor and Social Media Advocacy 
 
July 11, 2018, 7:30 p.m. EST 
Finding, Meeting and Cultivating a Relationship with Your Lawmaker 
 
Sept. 19, 2018, 7:30 p.m. EST 
NIH and FDA Advocacy 

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2018 Advocacy Prep Webinar

Advocacy Committee chair Stephanie Bozarth presents a webinar on how to advocate on Capitol Hill ahead of Rare Disease Day 2018.

View the webinar

 


How-to Webinar: Guide to Telling Your Story

Whatever the situation and audience, your personal story is incredibly powerful. It’s essential that we learn how to tell our stories effectively. Maybe you’re talking to a lawmaker to urge them to fund MPS or related disease research; maybe you’re talking to a physician or a teacher about your child’s needs; or maybe you’re sharing your story with the public to raise awareness about MPS and related diseases. Do you want tools and easy strategies for telling your story in an effective way? Listen to the pre-recorded webinar below. The file may take a moment to download.

Watch the webinar: Guide to telling your personal story effectively

Click here to download the PowerPoint presentation.

Click here to download the Work Sheet.


How-to Webinar: Guide to Social Media Advocacy

Are you interested in using social media to advocate to legislators about MPS and related diseases but aren’t sure how? Review the PowerPoint presentation below for tools and tips.

Click here to download the PowerPoint presentation.

Watch the webinar: Using Social Media and Letters to the Editor Effectively for Advocacy

Click here to download Tips for Using Social Media for Advocacy.

Click here to download Tips for Using Letters to the Editor for Advocacy.

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How to Webinar: Guide to In-District Legislative Visits

Are you interested in meeting with your legislators to discuss the National MPS Society but aren’t sure how? Review the PowerPoint presentation below for tools and tips. 

Click here to download the PowerPoint presentation.


Contact Your Representatives:

U.S. Senate

U.S. House


Additional Resources:

Contacting Your Members of Congress to Schedule a Meeting (pdf)

Strategies for Finding Information About Your Lawmaker (pdf)

Legislative Meeting Agenda (pdf)

Talking Points for Meetings with Lawmakers (pdf)

Strategies for Building a Relationship with Your Lawmaker (pdf)

How to Tell Your Personal Story (pdf)

Fact Sheets:

Legislative Meeting Feedback Form (pdf)

Our Mission

The National MPS Society exists to cure, support and advocate for MPS and ML.

Contact Us Family Support Programs