About the Foundation


 

Foundation Structure

The private foundation structure, with 2 founding trustees (Nicolas Vassalli and Taruna Reddy, parents of a child with PACS1 syndrome) who are also the donors, ensures an expedited review process and funds are put into research as quickly as possible.

Our foundation structure ensures that we have input and control over the direction of research to find therapeutics for PACS1 Syndrome. We have assembled a Scientific Team who are constantly collaborating to ensure that promising research initiatives and therapies are explored and implemented as quickly as possible to enable our children to attain their fullest potential in the shortest possible timeframe. All funding decisions are scientifically validated and made by the founding trustees based on recommendations and consensus from the Scientific Team.

What have we funded so far?

Since the PACS1 Syndrome Research Foundation was started as a private foundation in August 2017, we have funded $420,000 in Research Grants and $60,000 in set-up of the Tools. The research is focused on understanding the consequences of the R203W mutation in the PACS1 protein (PACS1 syndrome/SHMS), and to explore therapeutic approaches to alleviate its deleterious effects.