19TH – 23RD JUNE 2024 | LONDON – BILBAO
Unveiling Inspiring Routes and Luxurious Destinations
Spanning from London to Monaco and London to Bilbao, we’ve embarked on innumerable road trips across Europe. And in 2024, we’re thrilled to invite you to an exquisite 5-day tour across the landscapes of Spain!
” We had a really good time, really good weekend. We spent last night in Monaco fantastic hotel. It was a good laugh, really good people. Raising money for a really serious cause which is really important. “
Our rally looks to secure as much funding for PACS1 UK as possible. To enable us to do this we would like to invite sponsors to help us achieve our ambitions.
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.
We are working with leading architects, local councils, and carers to design the development of the Whole of Life Village concept to maximise care in our communities for disabled children throughout the whole of their lives into old age.
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”.