About Us

Our Mission

To support research

The Society and our members raise money to provide student fellowships and fund research projects at a number of prestigious university centers. Contributions may be designated for general or syndrome-specific research. Technical conferences are periodically held allowing researchers to collaborate and discuss their findings. The Society collaborates with other LSD patient support groups and family research foundations to fund research. Although great strides have been made in research, sponsors are urgently needed to accelerate the encouraging research that is bringing therapies – and ultimately the cures – to children and adults with MPS and related diseases.

To support families

The Society works in many ways. We publish an ever-growing series of resource guides dealing with specific syndromes and treatments. Our newsletter, Courage, contains letters and photos submitted by families, reports on the breakthroughs in research, and information on disease management and improvements in therapies. We hold conferences every year in different parts of the country enabling families to meet and learn more about their disease. Leadership families have been identified by both region and by syndrome to serve as valuable points of contact for newly diagnosed families. In addition, a fund has been designated to assist families to attend our conferences, to obtain medical products that will improve their quality of life, and to provide continuing education scholarships. We also provide much needed emotional support to all those affected by the tragedies of MPS.

To increase public and professional awareness

The Society sponsors public events, issues press releases, publishes syndrome and treatment materials and maintains a website. This website provides updates on research, legislative activities, family support, and upcoming events. Our committee on federal legislation advocates enhanced research in the pursuit of treatments for our diseases. We cultivate working relationships with Congressional offices and government agencies and advocate for enhancements to federal programs, such as SSI, Medicaid and others important to our families. The Society participates in international symposiums with a global contingent of medical and scientific professionals and networks with a growing number of international sister organizations.