News

Newborn Screening Biomarkers Study

This study is available to patients born in one of the following states: California, Indiana, Michigan, Minnesota, New Jersey, New York, North Carolina, Washington The National MPS Society is working with researchers at the University of Washington to improve the precision in newborn screening for MPS syndromes. The researchers would like to obtain the newborn … Continued

Angels Among Us

The National MPS Society will again publish “Angels Among Us, Remembering Our Loved Ones.” Its purpose is to remember individuals with MPS and ML who have passed away but who remain in our thoughts and hearts. If you would like to write something brief about a special person who had MPS or ML, please complete … Continued

The printed Courage magazine is back!

Welcome to the return of printed Courage–this issue is the first to be delivered since Spring of 2016. Looking back, the very first printed edition of Courage was sent in 1985, and members received a newsletter four times a year. Two years ago, a strategic decision was made to transition to an emailed electronic version. … Continued

2018 Research Grants Awarded

Dear Friends, Thanks to your hard work and support, the National MPS Society is thrilled to announce the selection of $450,000 in new research grants through our annual research program. This year, the Society will directly fund $550,500 in research, which includes grant awards for both 2018 and the second-year distribution of our 2017 grants.  … Continued

Speaker’s Bureau for 2019

The National MPS Society will be hosting another highly successful Speakers Bureau opportunity and would like to extend an invitation for all members to take part. Let your voice be heard by advocating for MPS and ML on Capitol Hill. Members are cordially invited to join us for a training webinar, in-person training, and speaking … Continued

Pathways Family: Faith Heard

In June of 2015, precious Faith, weighing less than two pounds, came into this world earlier than expected. She spent the first three and half months in the NICU in Nashville, Tennessee. When she was discharged, she was still on oxygen and was soon diagnosed with epilepsy and mild Cerebral Palsy. In February 2017, Faith’s parents, Linda and … Continued

Videos from the 15th Annual International Symposium on MPS and Related Diseases

Over the summer we hosted the 15th Annual Symposium on MPS and Related Diseases in San Diego where researchers and families gave a series of talks outlining the current trends in scientific discover as well as family assistance and discussions in clinical management.  The Welcoming Ceremony at the 15th Annual International Symposium on MPS and … Continued

Q3 Fundraising Lists

Quarter 3 Employee Giving Campaigns AbbVie Peter D’Urso Maureen Snider Accenture Stephanie and Austin Bozarth Amit Gupta Steven Kuhl Michael Wagner AT&T Jeffrey Tall Blue Cross Blue Shield North Carolina Amber Booth Dell Steven Roberge Genworth Foundation Brandy and Beau Bozarth Hewlett Packard Company Bruce Bjorkman IBM Joan Trainor Liberty Insurance Heather Wiesman-Barr and Nathaniel … Continued

Donations Made in the Memory of and in the Honor of for Q3

Donations Given in Memory of: Jeff Bardsley George Kennedy Barbara Devries William Hill Nelson and Lillian Howard Gilberto Rivas Karen Sabban Maci Eickman Diane Laforges Patrick Hyland 231 Farmington Avenue Associates Limited Partnerships Pat Keegan Ward Kyle Jack Andrew and Lauran Jack Allison Kirch Mark and Maryellen Pendleton Kraig Klenke Nancy and Joe Shelton Christian … Continued

Angels Among Us

Each year we remember those that we have lost. Please take a moment to honor the Angels Among Us. We encourage families to create their own remembrance pages so that together we can all honor and remember our special angels.