Fun, friendship, learning, and shared experiences was what was promised at the Trust's Annual Conference this year, and the weekend certainly delivered on all four, despite some appalling weather.
Nearly 250 people travelled to the Ettington Chase Hotel near Stratford upon Avon on Saturday 30 June and Sunday 1 July to listen to a range of talks, discuss topical issues, meet old friends and make new ones too.
Members were welcomed by Chief Executive, Richard Green, attending his first annual conference since joining the Trust in January. Richard spoke about his first six months in office and how he was inspired by the courage of families and individuals affected by SMA. He went on to thank both staff and volunteers for their hard work and determination and ended by restating his commitment to continue the work of Trust Founder, Anita Macaulay.
Richard then introduced Natasha Wood as the Conference's first speaker. Natasha has Type 2 SMA and has been taking the comedy world by storm with her one woman show "Rolling with Laughter". And the sound of laughter really did fill the room as Natasha talked about growing up with SMA and travelling to America with her job at the BBC.
The keynote scientific speaker on the first morning was Dr Stephen Minger from King's College London, who provided a fascinating insight to the world of stem cells and left delegates with a real sense of hope that one day, this avenue of research might lead to real breakthrough in the treatment of SMA.
Professor Kay Davies and Dr Kevin Talbot from Oxford University, two long standing friends of the Jennifer Trust, made a welcome return to the conference and gave us a wonderful overview of the efforts being made in their laboratory to unlock the remaining mysteries of SMA.
After the formality of the Trust's AGM and relaxing lunch, it was back to business with a choice of workshop sessions to attend.
In one session, Dr Minger tackled a wide range of questions from interested members following on from his presentation in the morning. Meanwhile in another room, Anna Mayhew explained how the Jennifer Trust funded SMARTnet project was seeking to devise an assessment tool for SMA types 2 and 3 that would be adopted around the world.
Dr Richard Finkel, who had flown in especially from the Children's Hospital of Philadelphia to be with us, shared some of the fascinating results from his SMA patient survey, ahead of his keynote presentation on the Sunday.
After a well deserved refreshment break, delegates were faced with yet more choices. Andrew Ronksley from the Aidis Trust ran a workshop on IT accessibility, which was designed to appeal not just to the computer literate amongst us, but to have real relevance to anyone using or thinking of using a computer.
Other choices included a workshop on access to communication and environmental controls, and a session on pre implantation genetic diagnosis which was run by Alison Lashwood, a Consultant Nurse in genetic counselling from Guys' and St Thomas' Hospital in London.
After a busy first day, great fun was had by all at the dinner and dance, which this year had a wild west theme. Everyone enjoyed the opportunity to relax together, discuss the issues of the day and share experiences. Entertainment was provided by Ad Hoc, a barn dance band, and their caller soon had many people on the dance floor, participating in a range of hilarious and often chaotic dance sequences.
An unfortunate, but short lived lift failure on the Saturday evening led to some hasty room swapping for some families and a number of people had to be carried to their rooms, but everyone got to their in the end.
Sunday began with the opportunity for quiet reflection at our traditional annual service of remembrance.
Immediately afterwards in the main conference room, Dr Richard Finkel took everyone on a grand tour of current SMA research being undertaken in different laboratories around the USA.
"I never realised so much was going on" was a typical reaction from one obviously impressed member of the audience.
Meanwhile, in an adjacent room, there was an opportunity for teenagers to discuss issues that were important to them and to tell the Jennifer Trust exactly what they wanted from the organisation.
Natasha Wood returned to the platform to chair the final plenary session of the conference. For "It's a wonderful Life", Natasha was joined on stage by Josie Rogers, Rick Webb and jay Tavernor, all adults with SMA variations. The group shared their personal experiences of living with SMA and answered questions from a very interested audience.
Another round of choices faced delegates after a refreshment break. This time workshops provided by Whiz Kids, Dogs for the disabled, and the Calvert Trust were on offer.
The planned picnic lunch in the garden of the hotel was spoilt by the heavy rain, but many delegates stayed to enjoy carpet picnics around the lounge of the hotel.
Feedback from delegates has been overwhelmingly positive, with most people determined to be back next year for what is already promising to be our biggest gathering ever. | 
