National MPS Society 2018 Research Grants Announced: Letters of Intent Due April 16th

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

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

Courage Newsletter

The latest version of Courage is now available!  Click here to see the latest news and announcements from the National MPS Society.

MPS Race for a Cure- Napa, CA

The National MPS Society will be hosting a timed 5K Run and Memorial Walk this spring.   Registration begins at 8:30 a.m. Timed 5K begins at 10:00 a.m.  1 mile memorial walk begins at 10:15 a.m.  Early bird pricing and discounted family registration is available now! LEARN MORE AND REGISTER HERE Picnic! Carnival! Drawing! Prizes! … Continued

20th Klenke Bowl

Join us for the 20 Year Anniversary of the KLENKE BOWL! This annual event is held in memory of Kraig Klenke and will benefit National MPS Society. Hosted by Kris Klenke and family Saturday, April 7th at 1 p.m. Location: Poplar Junction Lanes & Lounge – 301 Poplar Street, Highland, Illinois Registration begins at 12:30 … Continued

Rise Up For MPS

RISE UP FOR MPS: A Benefit Concert by Vocal Majority  Please join us on Saturday, March 17th at 7 pm for this concert! Concert Location: Midway ISD Performing Arts Center 800 N. Hewitt Drive, Hewitt, TX Ticket sales: Reserved seating is available from $25 through $100. Buy your tickets and learn more here. All proceeds … Continued

Terri Klein named National MPS Society president and CEO

We are proud to announce that Terri Klein, Interim CEO of the National MPS Society, has been named President and Chief Executive Officer. Terri has 14 years of experience in rare diseases, including her work with the Society for nine years, serving as Development Director and Director of Operations. She has been involved in all … Continued

Apply for a continuing education scholarship

Post secondary education scholarships are available for individuals with MPS and ML, their siblings (under age 30), their children and their parents. Scholarships are awarded in increments of $1,000 for full-time students, $500 for part-time students, and the Jeff Bardsley CED scholarship awards $5,000. The application deadline is March 15. Applications are only accepted using … Continued

Shire’s MPS II clinical trial fails to meet endpoints

Company will review data; analyze positive trends beyond initial results Shire announced today that top-line data from its phase II/III clinical trial for MPS II did not meet primary or key secondary endpoints. The endpoints looked at General Conceptual Ability (GCA) and Adaptive Behavior Composite (ABC) scores in Hunter syndrome patients. The National MPS Society … Continued