Image shows five members of the SWAN UK Council with Lauren Roberts, the National Coordinator of SWAN UK.

The SWAN UK Council is made up of some of our current members and acts as an advisory panel that helps make decisions about what we do and how we do it. 

It meets 4-6 times a year to review our recent activities, discuss any new issues arising affecting the undiagnosed community and how we can help. It also helps generate ideas for fundraising and reviewing our information. 

The SWAN UK Council is currently chaired by Louise James who was a SWAN UK volunteer Parent Rep prior to helping set up the Council.

The members of the Council have been carefully chosen to try and make sure that it reflects the variety of families who make up the SWAN UK community.  They welcome feedback and ideas from the wider SWAN UK community that they can feed into future planning.

If you would like to chat to a Council member, find out more about how you can get involved with the Council, or to find out more about its activities please email


Hello, I’m Briony. My SWAN Indy is 11 years old. I am looking forward to joining the SWAN UK Council because I have always wanted to give something back to SWAN UK as they have helped me through the dark times and now it’s my time to help others.


Hi, I’m Louise. I’m the Chair of the SWAN UK Council. I was a volunteer Parent Rep for the South West for years prior to the Council being set up. It’s such a privilege to be part of this exciting new project knowing it will help develop the support given to families just like mine.


I’m Marian, mum to Joseph who is now 21! We joined SWAN UK when Joseph was tiny – now he is taller than me and has a moustache. He was diagnosed with KCNH1 disorder when he was 18. SWAN UK has been, and continues to be, a great support to us and I am very happy to be part of this new stage in SWAN UK’s development.




Hi, I’m Martin. Josh is my SWAN and he’s 16 years old. He has puf60 syndrome. I’m so excited to be part of the new council, to help shape the future of SWAN UK going forward, and to be able to advise and support as many SWANs and parents as we can.


Hi, I’m Maura and I live in Draperstown, Northern Ireland, with hubby Ronan. Our SWAN Jack is 10, he’s the youngest of five boys. I’ve been an active member of SWAN UK for more than eight years and I’m excited to bring some information and knowledge to all members of SWAN UK, and especially our Northern Ireland group!


Hi, I’m Tonya and I live in Colchester, Essex, with my fiancé Reece and our two daughters, Darcy aged five and our SWAN Ivy-Grace aged four. I’m super excited to offer support to other families just beginning their undiagnosed journey! I was only 20 when I became a SWAN mum, so I believe I could be a massive support for the younger mums.