Humanitarian Mission

Helping Patients and Families

The Collaborative Center for X-linked Dystonia-Parkinsonism (CCXDP) is committed to helping patients and their families cope with the debilitating aspects of XDP by providing support in the Philippines, where the disease originated.

The Sunshine Care Foundation

Many patients in the Philippines face substantial physical and financial hardship as a result of living with XDP. The Sunshine Care Foundation (SCF) was established to meet the needs of these individuals and their families, and it serves as the primary affiliate of CCXDP in the Philippines. Through its clinics in Roxas City and Iloilo, SCF provides free medical services from a dedicated staff of movement disorder neurologists, nurses, genetic counselors, and clinic staff who are all highly experienced in caring for individuals with XDP. In addition, SCF offers multiple programs to support families in need.

Community Advocates

A major component of our program in the Philippines is our network of Community
Advocates (CAs), who are critical to ensuring that all XDP patients remain well connected to the SCF care team. This is particularly important in Panay, where some XDP patients may live in rural, hard-to-reach areas that lack consistent cellular and/or internet service. CAs visit patients in their homes, facilitate attendance at clinics through transportation plans, and monitor symptoms and wellbeing. CAs have shown remarkable initiative and dedication to the caregiving of their community members.