News

2018 Annual Fund – Hollands’ Hope

Please join us in supporting the National MPS Society’s 2018 Annual Fund Campaign. Learn why the Society is critical to our family and the MPS and ML community nationwide. Hollands’ Hope MPS I invaded our lives in 1994 with the diagnosis of our three precious children at the ages of four, three, and one. It … Continued

San Diego Superhero 5K & 1 Mile Memorial Walk

Join us in celebrating our super heroes as we conclude the 15th International Symposium on MPS and Related Diseases in San Diego. On Sunday, Aug. 5, the Society will host a chip-timed 5K run and one-mile memorial walk at 8:15 a.m. PDT. The race will take place at the lovely Spanish Landing Park, which is … Continued

Research Update Regarding Glycosylations of Simple Acceptors

Dr. Vito Ferro of The University of Queensland in Brisbane, Australia received a grant for his work in the field of MPS during the years of 2013-2015.  We are proud to share this publication, which concerns the chemistry of iduronic acid, a key component of GAGs.  It came about as part of a project funded … Continued

15th International Symposium on MPS and Related Diseases Scientific Speakers Announced

On behalf of the 15th International Symposium on MPS and Related Diseases, the Scientific Program Delegates announce the Scientific Program Oral Presenters this August 2 – 4, 2018 in San Diego, California. Selections were led by our Program Delegates:   Patricia Dickson, M.D. Harbor UCLA Medical Center Lorne Clarke, M.D. University of British Columbia, Canada Brian Bigger, Ph.D. University of Manchester, United Kingdom … Continued

Courage- May 2018 Edition

  The May edition of our Courage newsletter is now available for viewing.  Read it here!

MPS Awareness Day

The international community celebrates MPS Awareness Day each year on May 15.   In an effort to spread awareness about MPS during the month of May, we’ve created this calendar with activities on each day that help promote MPS awareness.  We will be posting reminders on Facebook and Twitter, so be sure to follow us and … Continued

15th International Symposium on MPS and Related Diseases

  Don’t miss this exciting opportunity to learn about new and innovative treatments, meet researchers from around the globe, and increase your network of friends and families!  The symposium is an opportunity for the MPS and related diseases community to share and exchange new information and develop strategies to keep us moving forward. This event … Continued

Million Dollar Bike Ride

Once again, Team MPS will be participating in the Million Dollar Bike Ride on May 20th. This event, hosted by Penn Medicine Orphan Disease Center, is critical for funding research for MPS and ML.  Whether you come to Philadelphia and ride as part of the team or make a donation toward our $50,000 goal, we are counting … Continued

National MPS Society 2018 Research Grants Announced: Letters of Intent Due MAY 7th

The National MPS Society funds research that may lead to treatments for MPS and ML diseases and solicits applications for innovative research projects that involve clinical research, basic research and translational studies. The application for Letter of Intent is now available. Register here to begin the application process. General registration questions can be directed here.  The grant … Continued

Inventiva Announces Positive Outcomes of Biomarker Study

Data confirm highly promising biomarker for MPS VI and limited enzyme replacement therapy (ERT) efficacy in reducing leukoGAGs Inventiva, a biopharmaceutical company developing innovative therapies in MPS, recently announced the positive outcomes of a biomarker study to evaluate intracellular glycosaminoglycans (GAGs) levels in leukocytes as a disease activity biomarker in MPS VI. To read the full … Continued