$674K in expenses

The society funded approximately 8 research grants during 2024 for the purpose of finding treatments and cures for MPS and related diseases. The chief scientific officer (cso) leads the societys strategic direction in research, newborn screening, and emerging science initiatives. This role oversees the development and funding of research programs to address unmet medical needs in MPS and ML disorders, guides advocacy for newborn screening expansion, and evaluates innovative scientific advancements. The cso collaborates with academic, clinical, and industry partners to drive progress in treatment and diagnosis, and ensures alignment with the organizations mission to support families and accelerate cures.

$500K in expenses

The national MPS society provides comprehensive support to families affected by MPS and ML through its family support and pathways programs. At the time of diagnosis and beyond, licensed social workers engage families through in-home visits and ongoing guidance, helping them navigate the complex challenges of living with a rare disease. The society also offers critical financial assistance, including funding for medical equipment, educational and bereavement scholarships, extended hospital stays, medical travel, and conference participation. These services ensure families receive compassionate, practical support. In the crossing paths program expands equitable access to education, clinical studies, and critical resources for families affected by MPS and ML in underserved inner-city and rural communities. Through outreach, partnerships, and tailored support, the program bridges geographic and socioeconomic barriers, ensuring families have the knowledge and opportunities to participate in clinical research and receive specialized care.

$804K in expenses

The society provided information services and educational support for affected families (newsletters, syndrome booklets, fact sheets, website, directory) and increased public awareness of these rare genetic diseases (conferences & advocacy).