Volunteering News and Events


Huge thanks to our newest #TeamTSA volunteer Kelly-Marie Brown, whose daughter, Abbie, has TSC. Kelly-Marie recently looked after a stall for us at the Family Fund Day in Brighton. Kelly-Marie also recently ran the Great South Run for us and says that she found both experiences to be incredibly rewarding.  Thank you Kelly-Marie!

Huge thanks to all TSC community members, volunteers and staff who attended our Bristol Regional Group Meeting on Saturday 4 November at Windmill Hill City Farm. Special thanks to Clare Griffin, our volunteer Bristol Regional Group organiser, and Matthew Richards, from Engage and Immerse who led a very popular interactive drumming workshop. 

Great work by #TeamTSA volunteer David Dunn, pictured here with TSA Adviser Kendra Rhodehouse, at the recent Family Fund Day in Birmingham. Thank you to all our #TeamTSA volunteers.

Massive thanks too to #TeamTSA volunteer Divya Mehta who represented the TSA at the recent Family Fund Day in Islington, London.


Huge thanks to #TeamTSA volunteers Ziggy Ahmed, Kathy Lukash and Sue who staffed a Family Fund Day stall for us recently in Grimbsy.

#TeamTSA were extremely busy at Fontwell Race Track on Sunday, 28 May, where we had an amazing 14 volunteers turn out for us to support us on the day. Working with Heart the South Racing and Fontwell our volunteers have helped to raise around £12,000 with the exact figure to be confirmed as soon as possible. Volunteer Manager Tanya Darnton says: 'A huge thank you to all the volunteers for all your time and support - it was very much appreciated.' 

Tanya adds: 'In line with #volunteersweek I'd also like to say thank you to everyone who has volunteered for the TSA at any time - we could not do what we do without you all.'




Dr Iris Egner, (pictured) of Cardiff University, volunteered for us at the recent Living with Genetic Conditions event hosted by Wales Gene Park. And TSA Ambassador Marie James gave a talk about living with TSC to assembled academics, students and members of the rare disease community. Says Iris: 'The patients presentations were amazing and I am so happy that I volunteered. I talked to many people about TSC as there were only two charities with a table at this event and we also got many positive comments about the fact that the TSA provides material in Welsh as well as English.' Huge thanks to both Iris and Marie.


April 2017


We'd like to say a massive thank you to everyone who came along to the Thames Valley Adventure Playground on Saturday 1 April for the first of our new big regional group get-togethers. Volunteer Manager Tanya Darnton says that she hopes you all enjoyed having the opportunity to meet with new families, as well as old friends, and share your experiences. She would love to hear from you with any feedback about this event that you would like to share with us. Please email tanya.darnton@tuberous-sclerosis.org with your thoughts.




March 2017

Huge thanks to #TeamTSA volunteers who represented the TSA at Salt Ayr lancaster Parent Network Family Information Day in Lancashire on Saturday, March 25, including Dave Earnshaw and Jane and Philip Rogers.


Thanks to #TeamTSA volunteers Dave Earnshaw, his daughter Emma, and Ruth Hays for representing the TSA at the Bradford Family Fund Day on March 7.


Big thanks again to #TeamTSA volunteer Dave Earnshaw, who is also a part-time DJ with Drystone Radio, in Yorkshire. Dave interviewed our Fundraising Officer kathryn Harrison last week to help promote our forthcoming #TeaandSCones 2017 fundraising campaign. Dave, whose grandson Max has TSC, also volunteers with other family members at Family Fund events for us, said: 'It was a pleasure to speak to Kathryn and I am keen to do as much as possible to support #TeaandSCones 2017 and the TSA.'


If you'd like to volunteer for us then please contact Tanya Darnton on tanya.darnton@tuberous-sclerosis.org or call her on 02380 730 823 or mobile 07597 180 088.




February 2017

We'd like to say a huge thank you to Christine and Alistair Henderson, TSA Volunteers, who staffed an information stand for us at the recent rare diseases educational open day held at Royal Holloway, University of London

Christine says: 'This event was attended by college/university students, school students, medical professionals and other charities and our stand attracted interest from all groups.'

So thanks Christine and Alistair for helping to share knowledge about TSC, encourage current, and future, medics, to recognise and understand the condition, and, raise awareness of Tuberous Sclerosis Association and all that we do.

If you'd like to volunteer for us then please contact Tanya Darnton on tanya.darnton@tuberous-sclerosis.org or call her on 02380 730 823 or mobile 07597 180 088.