Announcing Tracy Kirby, Director of Development

The National MPS Society is pleased to announce the hiring of a new Director of Development, Tracy Kirby. Tracy’s experience in rare disease includes eight years working with the Batten Disease Support and Research Association (BDSRA) and providing consulting services. Her background includes family support, development, and years of conference planning. Her knowledge of lysosomal storage diseases will help the team at the Society steward crucial relationships, increase resources, and manage national events to serve our MPS and ML communities. Tracy

Winter Courage

Our 2021 Winter edition of Courage is now available electronically to view or download! Click to read the latest information in research, clinical trials, family support, development, advocacy, and more. … Continued

100 Patient Project: Unlocking MPS

The 100 Patient Project is an inaugural part of a new registry for MPS and ML: Unlocking MPS. With an initial focus on MPS II, we are launching the 100 Patient Project to harness the revolutionary insights that can come from Whole Genome Sequencing (WGS) to better understand how genetic variation can inform future improvements to MPS disease management. Sign up to join us today!

North Carolina Signs Legislation for Newborn Screening to Support RUSP Alignment

The National MPS Society shares excellent news of the signing of HB 736 in North Carolina. The law is recognized as Recommended Uniform Screening Panel (RUSP) alignment legislation and provides a three-year timeline for the State to begin screening a newborn for a life-threatening condition. These are conditions that were recommended by the Department of Health and Human Services. This forward-thinking legislation implements a platform to save the lives of more than 500 babies each year.

2021 National MPS Society Annual Fund

The 2021 Annual Fund is underway! Learn more about our Annual Fund Chair, Stephanie Bozarth, and the importance of this critical campaign for our mission.

MPS Logo Wear Sale

Spread MPS awareness this holiday season with bundled and discounted items in our logo wear store!

2020 Annual Report

Every year, the National MPS Society produces an annual report. This report outlines key fundraising efforts and the work of our amazing committees. It also details the grants we have subsidized and invested, as well as our financials.

Science Showcased at 35th Annual Family Conference

This year’s science sessions at the Society’s 35th Annual Family Conference marked the first year of a full concurrent scientific session featuring more than a dozen speakers from the United States, Australia, and Europe and a diversity of presentations. We heard from six scientists who serve on our Scientific Advisory Board (SAB); 10 speakers were past, current, or new recipients of Society Innovative Research Grants.