News

2019 Courage Awards

Spencer Friedman with his 2019 Courage Award Did someone you love get a 2019 Courage Award? Do you want them to be in the full gallery of all award recipients, then send an email with a picture to jacob@mpssociety.org and he’ll update the gallery. To see who is in there now, click here!

Newborn Screening Biomarkers Study

DEADLINE EXTENDED! 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 … Continued

Angels Among Us: Remembering Our Loved Ones

Each year we remember individuals with MPS and ML who have passed away but who remain in our thoughts and hearts. We invite you to join us in reading about and remembering our cherished friends and family. 

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

Q4 and Annual Fund Donors

The Holland Family Annual Fund Campaign Raises $203,362 2018 HAS BEEN A TERRIFIC YEAR FOR THE 17TH ANNUAL FUND! We reached another new level of giving by of cherished donors to the Society who believe in our mission. This critical funding stream keeps the organization strong. Through your tremendous support you have shown the Society … 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