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In March 2007 we celebrated our 10th Anniversary and 5th National Day!
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Did you make it to the Fun Day in Bristol in 2006? Families from all over the UK gathered together at the @Bristol complex.
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On Saturday 28th January 2006 at St. Gregory's Social Club Farnworth, Bolton, we held the Phoenix Nights Fundraiser. The event was themed on Peter Kay's popular comedy TV series 'Phoenix Nights' and the venue for the event was the actual club where the series was filmed.
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The day of the ISG 10th anniversary conference had finally arrived. After months of hard work and preparation it was time to put all the plans into practice. The stage was set, and from as early as 6am members started to arrive. We were all soon mingling and enjoying the friendly atmosphere provided by the excellent facilities of the Holiday Inn at Bloomsbury, London .
Excited children trooped upstairs anticipating their trip to the Natural History Museum, or to meet their crèche supervisors who had brought a wide variety of entertaining projects for them to enjoy. The parents were able to relax and enjoy the welcoming refreshments with others gathering in the lobby.
The conference started and in the lecture theatre our Chairman Ray Rowley got the show on the road with a brief introduction to the activities of the day. This was quickly followed by Dr Celia Moss who once again gave an excellent overview of ichthyosis. Specialist Skin Care nurses had accompanied Celia from Birmingham Children’s Hospital to talk about eye care and to provide a ‘hands-on’ demonstration of the correct ways of applying cream to the scalp, feet and hands. This introduction was very informative and produced a good interactive session.
After a short break we split into groups to discuss the issues relating to the different types of ichthyosis. The ichthyoses vary enormously and because some types have specific problems, it was a great opportunity to meet and talk with others with exactly the same issues and to share their similar experiences.
This was followed by a lovely lunch supplied by our Chef Andreas who catered for all types of food preferences and allergies.
Throughout the day a rolling collage of photographs from various ISG events of the last 10 years were shown on the big screen with a music soundtrack. It was great to see members excitedly pointing out their families as they spotted themselves captured in these pictures.
An important aspect of the day is the many different professionals offering their professional and practical advice. This year representatives from Contact a Family and the British Association of Skin Camouflage and a Great Ormond Street Hospital Family Support Worker kindly attended and a number of pharmaceutical companies handed out samples, leaflets and good advice.
The ISG also manned its own stand with ISG merchandising, information on fund-raising, and the last opportunity to sponsor one of the 600 ISG balloons to be launched later that day.
After lunch it was time to see and hear from some of the trustees at the AGM. It was great to learn how the group has grown over the last ten years and how well it is doing. Updates were given on events of the last year and how awareness had been raised by the publicity ichthyosis and the group had received. The trustees also gave an update on the group’s finances and the plans for the future of the ISG. A huge round of applause followed the mention of the group’s first grant of £5,000, donated to research into Harlequin Ichthyosis.
Another round of applause greeted the announcement that the Fundraiser of the Year was Melanie Edwards. Melanie raised in excess of £2500 by staging an ISG Phoenix Night in her home town of Bolton in 2006. Unfortunately Melanie was unable to attend the conference this year so her award was accepted by an extremely loud and very funny lady who came up onto stage. It took a moment or two to realise that this was actually Janice Connolly (Holy Mary from the television programme Phoenix Nights) playing her alter-ego, Barbara Nice. She had the audience in stitches and it was great boost to us all to have a professional performing a comedy act right in the middle of the National Day.
Following on from this comedy slot and feeling relaxed and happy, our members split into 5 discussion groups. This time it was to concentrate on the issues relating to the different ages – parents of babies & toddlers, parents of small children, parents of teenagers, adult sufferers and one for grandparents etc.
Throughout the afternoon a number of members took up the opportunity to have a private session with one of our Psychologists. This is an important area that we anticipate expanding at future conferences.
Our keynote talks in the afternoon were on the latest research into ichthyosis. Starting the talks was Prof Harper from Great Ormond Street Hospital who gave a very interesting presentation on the latest research with Netherton’s Syndrome, followed by Professor Kelsell who gave an in-depth talk on his research into Harlequin. Prof Irwin McLean was due to fly down from Glasgow that very morning to give a presentation on his latest research on Vulgaris ichthyosis but because of fog and various traffic accidents he was unable to make the flight. However, he sent his presentation via email to Dr Edel O’Toole and she did a superb job of presenting in his place.
During the course of the day a number of stoic volunteers were tucked away blowing up the 600 balloons and whilst the professors were giving their talks all these balloons were desperately trying to escape. Towards the end of the conference and when we were all engrossed with the Q&A session, which was chaired by out MAB chairman Dr David Paige, the balloons were formally released to celebrate our 10th year and it was filmed by our voluntary sound, vision and camera crew.
Founder trustee, Mandy Aldwin wrapped things up by recapping the last 10 years of the ISG. She introduced photographs on the big screen of very sickly children from 10 years ago and quickly followed this up with fantastic photographs of these same children today, smiling, jumping with joy and looking terrific. These same children launched the balloons a few minutes before and this was shown on the big screen to great laughter and applause. It was very windy and we wondered if they might all lift off with the balloons and maybe get stuck with the balloons in a nearby tree. The children then trooped into the lecture theatre to show their very own ‘Ichthyosaurus’, created upstairs in the crèche that day. With the Sunday People photographer in attendance there was much excitement.
At 5:30pm the conference came to an end and for a large number of members there was only just enough time to rush to their hotel room to freshen up. Over 110 of us stayed for a fantastic dinner and evening celebration, where we were entertained by Pulse (Harlem Globetrotter cheerleaders), and from speeches from our Chairman, from Prof Harper and from music and entertainment provided by a super DJ. The children and quite a few adults were up dancing all night, and there were many cases of sore feet (especially for the children with Bullous ichthyosis) at the end.
On the Sunday morning we were very grateful to Prof Harper, Dr Paige & Dr O’Toole for giving up their time for private consultations. This was a great opportunity for many of our members to finish off a memorable event.
It was an exhausting weekend but one which will be remembered for a long time. We met many lovely people who were all happy to share their experiences.
There are many people to thank, but the success of the day was mostly due to the members who attended and who shared their experiences, their knowledge and their love.
Thank you to everyone who came and shared in our 10th anniversary celebration.
For photos of the day follow click here