This year we are creating the opportunity to bring as many r(20) families together over a weekend, with the main focus being a workshop to create content for a patient information booklet specifically about r(20) syndrome, created by-families-for-families.
Useful information links:
To help create a fun and informal atmosphere, we are hosting the workshop at Birmingham City Football Club and inviting Rossie Stone, a comic book illustrator at Dekko Comics to bring all your ideas to life!
Our very own Medical Advisor Dr Sophia Varadkar will be there, together with Emma Ninnis (Epilepsy Specialist Nurse) – whom some of you will remember from Liverpool? As many of our r(20) member patients are now under adult services we are delighted that Dr Manny Bagary (Consultant Neuropsychiatrist) and Phil Tittensor (Consultant Nurse for the Epilepsies) are also joining us. Head over to our Healthcare Professionals page to find out a little more about them all.
The main workshop will run between 10am-5:30pm (tbc) on Saturday 23rd November and includes lunch and refreshments, followed by a Stadium Tour before drinks and dinner in the evening. The detailed program can be found here.
For those arriving on Friday evening there will be an opportunity to meet up for drinks and say ‘Hi!’ at the bar in the Ibis Hotel, Bordesley Circus. And for those staying over until Sunday there will be an optional Epihunter workshop as well as free time to catch-up – which we know is vital for mutual support. We will make time to take a trip to nearby StarCity for some family fun activities at Adventure Mini Golf to end our morning before saying goodbye.
Tickets available here: Workshop Tickets
Depending on your preferences, location and budget you can choose to attend just the Saturday workshop (and dinner if you wish) or stay longer, from Friday evening until Sunday lunchtime and make a weekend of it.
Travel and accommodation are your own responsibility. However, we wish this to be an inclusive event and therefore we do have a small bursary fund available to help any families who might otherwise be unable to attend. Do contact firstname.lastname@example.org in confidence if you would like some assistance towards travel and/or accommodation costs.
After the event we are planning to get our r(20) youth involved in a project to work with Rossie’s team to produce the final booklet and are seeking funding so that we can print the booklets and provide them FREE of charge to all r(20) families.
This event is kindly supported by: