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


Help us make a difference for MPS and ML

There are no cures for MPS and ML, and only four 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 join our monthly advocacy call to hear what’s on the horizon and what we’re working on currently.

Advocacy pledge

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

Federal legislative links Find out about local, state, and federal government agencies, programs and benefits. Find your representative, keep up to date on events on the House floor, or contact your representative. National Institutes of Health website. Find news, health information and links to NIH institutes, centers and offices. Find your senator, keep up to date on events or contact your senator. Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.

Support Toolkit

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

Summer 2015 Webinar:

Making Noise about 21st Century Cures During August Congressional Recess:

The Legislative Advocacy Committee of the National MPS Society presents information about the 21st Century Cures Act — an exciting, high priority bill that has bi-partisan support in Congress — and learn how YOU can help get it passed by visiting with your members of Congress in August.

Click here to view the presentation.

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.

Guide to telling your personal story effectively (webinar)

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? Listen to the pre-recorded webinar below for tools and tips. The file may take a moment to download.

Click here to download the PowerPoint presentation.

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? Listen to the pre-recorded webinar below for tools and tips. The file may take a moment to download.

Click here to download the PowerPoint presentation.

Contact Your Representatives:

U.S. Senate

U.S. House

Additional Resources:

How to Find Your Members of Congress (pdf)

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:

Requested Report Language for Fiscal Year 2014 Appropriations (pdf)

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