The National MPS Society hosts an Annual General Membership meeting to provide updates and report back to our membership. We are here to support you! This took place via webinar on Tuesday, November 19, 2019. Click the link below to review the webinar and learn about the work of the Society over the past year.
The 2019 Annual Fund is underway! Meet Jason Madison, Chair of the 2019 Annual Fund. Jason was diagnosed with MPS II (Hunter Syndrome) at the age of six after his mother watched his uncle suffer similar symptoms. Jason Madison and the National MPS Society hope that your family will make a difference by giving to … Continued
Our annual report outlines key fundraising efforts and work of the committees over the past year. Within the annual report are details of the grants awarded and financial statements. The National MPS Society provides funding for research, support to families, and works to advocate for cures for MPS and ML. Click here to read the … Continued
Families across the country received purple birds to help raise awareness! These birds traveled around the world to spread the word about MPS. Families and individuals with MPS submitted pictures of the adventures of their purple birds. These were shared on Facebook and voted on to determine the winner of the contest for this year! … Continued
May is a very special month for the National MPS Society. The Society and its members celebrate International MPS Awareness Day on May 15 and on that day we: Honor everyone in the MPS and ML community Recognize all the children and adults diagnosed with MPS and ML Think about the loved ones we have … Continued
The National MPS Society recognizes research and clinical trials for MPS and ML exist around the world. We are pleased to share some ongoing clinical trials, with current enrollment, listed below. For more information about ongoing clinical trials, please visit: www.clinicaltrials.gov. Please contact Terri Klein for any additional questions. Hurler Syndrome ( MPS I … Continued
The Research Grant Program for 2019 is officially open. In 2019 the Society will continue funding research with the goal of finding treatments and cures for MPS and ML. The Letter of Intent application is now available for innovative research projects that involve clinical research, basic research, and translational studies. Register here to begin the application process. General registration … Continued
Come Ride with Team MPS on June 8 in Philadelphia Every Donation up to $30,000 will be matched!
Leading up to MPS Awareness Day, the National MPS Society is looking for as many families as possible to participate in raising awareness and engagement outside of the community. The average person has around 300 friends/followers on social media. If we had just a few of them share our stories we could easily reach millions … Continued
The National MPS Society will host a chip-timed 5K Run and Memorial Walk at the beautiful campus of Napa Valley College followed by a family picnic and carnival as well as drawing, prizes, a silent auction, and live music throughout!