Whole Life Villages are a care concept for disabled children and their families to live, play, learn, work and be safe.
We are raising funds to design & build a care village comprising of Housing a respite centre, care home, cafe, restaurant, education hub, gardens and safe place to play and relax.
PACS1 Syndrome is a very rare genetic condition caused by mutation of the PACS1 gene. It is not inherited from either parent (a “de novo” mutation) but it will be passed on to a patient’s child. As of 2019, there are now 100 cases that have been identified worldwide. Diagnosis is typically done using full genome or exome sequencing.
Both methods are expensive and not easily available. There are likely many more cases out there, that will eventually be reported as people learn about the condition, and testing becomes more affordable and available .In combination, this condition affects walking, talking, feeding, and learning skills. No impact on life expectancy has been found. Currently there is no single “cure”.
What is our goal?
We are trying to raise money to start the research and possible cure of some kind. We are holding events all around the world but with only 50 children diagnosed we are a small group of parents trying to raise money.