Meet our team

My name is Tash, I live in Somerset with my husband Matt (Zellweger UKs resident dogsbody) and our two living children, Harvey and Charlie.  Our son Cam was on the Zellweger spectrum and sadly died in 2019 at the incredible age of 21 years old. He has been and continues to be the driving force behind the work I do here at Zellweger UK, to continue his legacy as we support families in walking the paths trodden by our children. 


I’m Kerry from Portsmouth, I was lucky to have a beautiful blue eyed baby girl called Ellena May born August 2011, she loved blowing raspberries at everyone and making people laugh. I am now an angel mum as she grew her wings in June 2012. I work in the third sector and have about ten years’ experience of working and volunteering for different charities. I’m very excited to be part of this team of amazing parents who are supporting each other and fighting against all the PBD Zellweger Spectrum Syndromes.



I’m Carly from Wiltshire, I have 2 beautiful boy’s Kian (8) & Isaac (6). Since meeting other families at our first UK meet up I have been on board to get Zellweger UK up and running to support our children & other families. The boy’s have the biggest personalities and everyone falls for their cheeky sense of humours. Life can be a whirlwind at times but having the support from other families makes hard times that bit easier.


Hi, I’m Alex. I am the mother of a beautiful boy named Evan who sadly passed away in July 2017 after a courageous and valiant battle with the unforgiving Zellweger’s spectrum disorder. I live in Somerset with my amazing Husband his 2 gorgeous girls Faith and Immy. Having leaned upon the Zellweger charity and the support groups set up by the charity to help me through some difficult times, I felt it was time to give something back to this wonderful charity. I really want to see and assist ZUK reach it’s true potential and support other families just as ZUK supported mine.


Hi, I’m Rudi. Mum to three, wife to one. Our Family of 5 lives in Surrey. Cameron is our hero, turning 13 this year! Cameron is deaf/blind but boy what an amazing personality he has, he never fails to put a smile on my face. Younger Siblings – Freya, my little saviour who helps me no end. And Roni….. well he’s my youngest. I am so excited to be joining this amazing group of parents as we stand together to support our families and fight PBD and Zellweger Spectrum Disorders as one.


Hello, I’m Steph and I am from Liverpool. I live at home with my Husband Adam, and I am the Mummy to two angel babies Louis (who wasn’t effected by ZSD) and Teddy who passed away on Christmas Day 2019 shortly after his 2nd birthday. ZUK has been a massive shoulder for me to lean on during the toughest times, so now I have some time on my hands I want to give something back and help support other families during their journey.


I’m Stephen, 37yrs young, married to Sarah. We have 3 energetic boys Sean (5) & twins Liam and Donagh (4). Liam has PBD which doesn’t stop him from being the most loveable rogue (Irish saying for a charmer). He has everyone in his life wrapped around his little finger. My hobbies include motor rallying, GAA & soccer, I have been known to have the occasional pint of Guinness and can perform a mean air guitar after such pints! Looking forward to helping out in our next family meet up.