Information & Support Day - SMA Type 2 or Type 3 (April 2016)

The day was booked out and Ettington Chase Hotel was positively buzzing. 53 
children, young people and adults with SMA attended along with 119 parents, grandparents, siblings, partners, other family members and PAs.

Thanks to Martyn Sibley for capturing this day and the following National Fun Day on DVD. The sound gets lost at times but the atmosphere is there: Watch the video

Aidis Trust, Ask Jules, Dragonmobility, MDUK, Remap, SMART Wheelchairs, The SMA Trust, our Research Correspondents and our Information Service all ran stalls and were more than happy to answer any questions.

Thanks to Children in Need's funding, we were able to call on Nipperbout to provide excellent childcare while 11-18 year olds chose to talk and share experiences in their own space or took part in CREATE's film making workshop:

Young People Talking

'Through Our Eyes' Film Making and Films

Everyone else took part in one of the 'talking together' workshops that ran throughout the day. For the last session we gathered together for report backs and a brief overview of what is happeneing in research. 

The workshops were very much about sharing tips, experiences and advice which we have tried to capture in the workshop write ups:

Parents/carers of children with SMA aged up to 11 years

Parents/carers of children with SMA aged 12-18 years


The day ended with everyone coming together to hear short reports from all the workshops and finally listened to our Research Corrspondents Alex and James who gave a:

Research Round-Up

Our thanks to the workshop facilitators and volunteers who made the day so successful and to Ettington Chase Hotel for managing the challenge of such huge numbers so readily.

And, of course, our thanks to everyone who came. One participant summed up the day:

"The day was amazing - sharing worries, finding strength and solutions. Making new friends."