The 2013 FSH Information Day in conjunction with the Muscular Dystrophy was a great success.
As a Support Group our aim is to get information out to our members and non-members and with the help of the Muscular Dystrophy Campaign we had our most successful conference to date. With over 120 delegates it was great to see so many new faces as well as getting our information out to members new and old.
It all started back in January when the Muscular Dystrophy Campaign approached the group with their plan to have an FSH information Day and asked the Support Group to be involved. Katie, one of their lovely fundraisers proposed that they would find sponsors to facilitate the event and this allowed delegates to attend free of charge. This left just over 4 months to organise the day and it is with much gratitude to the Muscular Dystrophy Campaign that this event went ahead and reached as many people as it did.
The event really started on Friday 10th May when Committee Members landed at the Daventry Court Hotel to start setting up for the following day. Also it was a chance to meet any delegates who were staying at the hotel ready for the following morning. We commandeered a table in the restaurant and committee members and delegates were treated to a lovely meal with excellent service from the staff of the hotel. It was a great icebreaker for some who had never met any other FSH’ers outside their own family. Stories were swapped and a relaxing evening ensued.
The following morning The Muscular Dystrophy Campaign Team were out in force, along with our Committee members meeting and greeting along with stall holders who had generously sponsored the event.
I have to say I really enjoyed this as I met many people that I correspond with online via Facebook, but had never met and it was a real treat to finally meet everyone. Information packs were handed out and so the day began, almost without hitch.
Our Speakers were filmed so this will allow even more of our and MDC members to access the news on research and the new FSH-MD registry which has now gone on line so if you were not able to attend you will be able to take this in at your leisure.
Andy Findlay opened the day’s proceedings by welcoming everyone on behalf of the FSH Support Group. We then had Introductions off Robert Meadowcroft, CEO Muscular dystrophy campaign and Andrew Graham a fellow FSHer and Trustee, Muscular Dystrophy Campaign.
Dr. Fiona Norwood, Consultant Neurologist King’s College Hospital London then presented her talk, “A Clinical Overview” This was followed by a research update presented by Professor Jane Hewitt from the University of Nottingham.
After a short comfort break Professor Hans Lochmuller and Libby from the MRC Centre for Neuromuscular Disease at Newcastle Institute of Genetic Medicine, Newcastle University launched the FSHD Registry.
We then welcomed back Andrew Graham to hear about the “Action for FSH” campaign and ways in which our members could help.
After lunch delegates had a choice of workshops, “What can physiotherapy offer in the long term management of FSH” run by Jo Reffin Clinical Lead Physiotherapist, King’s College Hospital London or Support & Advocacy run by David Moore-Crouch, Campaigns, Information & Advocacy Officer MDC
Robert Meadowcroft wound the day’s proceedings up by thanking all of the speakers and those responsible for staging the event. Everyone agreed that it had been a huge success.
I hope everyone who attended were glad they made the effort to attend, I know I always gain something positive from the experience of meeting other FSH ers. Please, anyone who wishes to get in touch with our group, please do not hesitate to contact one of our members via the website fsh-group.org, we will only be too happy to help in any way we can. You can also find us on Facebook by searching FSH-MD Support Group UK and ask to be added. Facebook is a great way to access instant feedback to questions you may have relating to FSH, or just a way of being in contact with someone who knows exactly what living with FSH is like. I’m looking forward to the next one.
Liz Williams
