Therapeutic & Supportive Care
In the therapeutics and supportive care space the foundation is pursuing a multi-pronged approach to support families in getting the most immediate research questions answered. The 2021 survey of parents emphasized that the highest unmet needs to support and improve daily life were:
- Speech and language deficits
- Developmental delays
- Behavioral issues
- Sleep issues
Over the next three years, the foundation will work to build knowledge in these spaces by:
- Building Relationships
- Disseminating Knowledge
- Supporting Research
Building Relationships: A key step in building knowledge is to ensure that key relationships are developed and nurtured. The PRAC is an important component of this work, to continue to build on a base of known researchers and to expand our relationships in the key areas of value for families. These relationships will have to be with researchers in targeted areas, with other patient organizations whose research interests are aligned with the foundation and with professional organizations whose work is connected to the key areas above.
Disseminating Knowledge: As the PRAC grows and evolves, the foundation will support PRAC members to attend key conferences and present knowledge at PRAC meetings and share content with the broader SAS community about research of impact. Another major goal is to work in conjunction with practitioners to build clinical awareness of SAS, and opportunities for professionals to support individuals in a path towards diagnosis.
Supporting Research: The Foundation is exploring the formation of seed grants to fund research in the therapeutic and supportive care space. The foundation will leverage the work to build relationships to support researchers doing work in key areas of interest as well as explore opportunities to co-fund opportunities with other patient organizations. The Foundation will also explore working in collaboration with researchers to apply jointly for larger grants and work to ensure researchers have appropriate access to individuals with SAS.