The northern foothills of Dartmoor provided the stunning backdrop for the fourth annual Zellweger UK Family Conference on 6-8th July when 24 families came together for two sun-drenched days at the Manor House Hotel in Okehampton, Devon. This year all of our accommodation, conference and leisure facilities were in one place, so there was no driving between venues – a huge bonus in such heat! The conference opened on Saturday morning with a welcome session by Tash (Chair) and Kerry (Treasurer) which highlighted the incredible work that’s been going on behind the scenes at ZUK over the past 12 months. It was so inspiring to hear how the charity, now in its third year, is going from strength to strength; supporting more families, raising awareness and much-needed funds, while also cementing relationships with our scientific and clinical networks.
Once again, we had a fantastic line-up of guest speakers, both familiar and new, who gave up their time to share their expertise, insights and latest research findings:
- Dr. Effie Chronopoulou, Paediatric Metabolic Consultant, and Katie Smith, Specialist Metabolic Nurse, from Bristol Royal Hospital for Children gave a very clear and informative overview of Peroxisome Biogenesis Disorders and the Zellweger Spectrum.
- Professor Alison Baker and PhD student Sophie Moul from the Faculty of Biosciences at Leeds University updated us on their work comparing peroxisomes in different organisms to better understand how they work in human cells.
- Professor Hans Waterham and Dr. Femke Klouwer, from the Laboratory Genetic Metabolic Diseases at the University of Amsterdam, joined us for the first time to discuss their diagnostics and research on the care and management of children on the Zellweger spectrum. This included wonderful insights on managing symptoms of the disease, as well as exciting research into ways to possibly restore peroxisome function in milder defects.
- Professor Michael Schrader from Exeter University’s Department of Biosciences outlined recent fascinating discoveries by his team at Schrader Lab, which could ultimately pave the way for better drugs and therapeutic approaches, not just for peroxisomal disorders, but other conditions too. Prof. Schrader was joined by lab colleagues Tina Schrader (Research Technician), Dr Joe Costello, PhD student Josiah Passmore and Masters student Suzanne Kors.
It was truly heartening to hear about growing scientific interest in peroxisomes and all the research underway to unravel their mysteries. We’re so fortunate to have such smart, warm and approachable people working in this area – all of whom stayed on after their talks to socialise with us and answer any questions.
Throughout the day, a dedicated army of volunteers looked after both our affected and non-affected children, who were lovingly cared for and royally entertained with a packed programme of soft play, craft and music activities – along with laser shooting, archery and bowling to name but a few.
Towards the end of the afternoon, a bereavement and a mingling session ran concurrently, offering families an opportunity to share experiences and gain knowledge and support from the few people who really understand what this diagnosis entails. We ended the day with a brief wrap-up session thanking all the fantastic people who made it possible, then headed to the restaurant for an informal dinner together followed by a lovely evening spent chatting in the bar.
On Sunday families were free to enjoy the hotel’s vast range of facilities. Special thanks to Suzanne Cooper for leading an aqua aerobics class in one of the two lovely pools. And with so much on offer, it was hard to know what to do next – from crazy golf, to rollerblading, tennis, pedal carts and everything in between!
After one last buffet supper, it was time to head home – and, as always, a wrench to leave. Life with Zellweger Spectrum Disorder is tough and can feel isolating, so this event is a wonderful opportunity to spend time with each other, share the joys and sorrows and, crucially, have some fun with our wonderful kids.
Huge thanks to everyone for making our 2018 Family Conference such a success, with a special shout out to our sponsors:
Our photographers Simon Hawkins and Steve Hughes captured some brilliant images of the day which you can see here. Jonathan from Warner Vision TV also kindly made a short video which you can view here.
And a special thanks to The Manor House Hotel for being so accommodating and helpful, you made the weekend very special.
Roll on next year!