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Our Story

PACS1 Research UK has been a registered charity since 2017, focused on raising awareness and making sure children with PACS1 are safe and cared for today and for their whole lives.

Meet Anya and Roy, 2 min

Anya and Roy

Roy and his middle daughter, Anya, are the driving force behind The Wacky Races – a cause close to their hearts. They organise events to raise awareness and vital funds for PACS1, the rare genetic condition that affects Roy's youngest daughter, Nina.

Their main fundraiser is an annual Car Rally across Europe. They have also recently introduced a Sailing Regatta. Both events are supported by their fantastic trustee sponsors from across the construction industry.

What started as a personal family mission has grown into a wonderful community, bringing people together through friendship and adventure to make a real difference for those affected by PACS1 and other disabilities.

For us, as a family, The Whole Life Village is about creating a place where young adults with disabilities can feel safe, happy and supported throughout their lives.
As parents and siblings, we want the reassurance of knowing they will always be cared for. We want them to enjoy life, build friendships and have the freedom to be as independent as possible.
Our vision is to create a welcoming community where everyone has the opportunity to develop and grow. A place where they can stay connected with others who understand life with complex needs. Most importantly, somewhere they can truly call home and always feel they belong.
Roy and Anya Parrish

Nina

Nina is the light in all our lives. Her positivity and joyful personality touch everyone she meets. She is surrounded by a loving family and support network, but sadly, not every family is as fortunate.

Nina was diagnosed with PACS1 at the age of eight. The only support we were offered was to join a Facebook group. There was no further investigation or practical guidance. She attended a small village primary school, where she was held back for several years as she needed extra time to develop. Her wonderful headteacher even offered to visit specialist schools with Nina's mum to help find the right environment for her, which is when she started to attend a mild disabilities special needs school.

Nina took longer to walk and speak. She cannot read or write and needs support with everyday tasks such as washing, cooking and using the toilet. She requires 24-hour care and will need this throughout her life.

Now 19, Nina has left the education system. School gave her routine, opportunities to learn and develop, and gave her parents some respite while they continued to work. Without that structure, she now lives at home and attends a few local clubs. However, these can be expensive and funded care is extremely limited.

There is very little support or planning for young adults like Nina once they leave education. The responsibility falls largely on their families, who are left to provide lifelong care with little help.

Despite these challenges, Nina's love for life shines through. She loves her family, the sea, dancing and singing. Her smile, positivity and warm hugs bring happiness to everyone around her. She doesn't see herself as different, but we worry about what the future holds for her.

We want Nina, and others like her, to have a happy and fulfilling life, with the right care, independence and sense of belonging. The Whole Life Village is our hope for making that future possible.

How we got here

From a registration form to a rally across Europe.

2017
PACS1 Research UK is registered
The charity is registered with the Charity Commission as a charitable incorporated organisation.
2022
Wacky Races goes European
The Wacky Races European rally drives through some of the continent's best roads in aid of PACS1.
2025
London to Geneva, and a first gala
The rally runs from London to Geneva via Nancy, Interlaken and Lake Como. In October, our first charity gala dinner is held at Down Hall.
2026
£48,000 in a single rally
The tour covers more than 2,000 miles and raises £48,000 for PACS1 Research UK.
2027
Through Europe and the Dolomites
The next rally runs from 7 to 13 June. Find out how to take part.