Newborn Screening Study

Now recruiting patients born in: California, Michigan, New Jersey, New York This study is also recruiting any patients in any state who have privately banked cord blood and would provide a single-drop sample. Please contact Leslie Urdaneta directly if interested. This study is available to patients with MPS II, III, IV, VI, and VII born … Continued

2019 Annual Report

With a nod to our 45 year history, the 2019 Annual Report outlines the amazing work of our committees, and highlights key efforts in fundraising, research, and support over the past year.

A Quilt of Gratitude & Remembrance

This beautiful quilt represents over 20 years of love and commitment to an organization we believe really helps families through the entire MPS journey.

Mucolipidosis II, II/III and III a/b linked with sleep-disordered breathing

For years, families have recognized sleeping disorders are manifestations of Mucolipidosis (ML) II, II/III and III a/b. Still, there have been limited studies conducted and limited objective data. A recent longitudinal study out of Paris, France has now provided new insights around sleep-disordered breathing. Patients of the Lysosomal Disease Center of Neckar Hospital were studied … Continued