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The FOLKS Parents' Day was held at the Marriott Hotel, Leicester, on Saturday
23rd September 2006. See below for a
report, presentations and pictures from the day.
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FOLKS Parents' Day at Leicester 2006
Marriot Hotel, Leicester. What a successful day. The day started by organising all the kids into the playroom with the carers so the parents could grab a coffee, relax and sit back and listen to the speakers. Angie Conlon opened the day with a big thank you to Wednesday’s Child for making a donation to make the day possible.
Agenda & Presentations from the Parents' Day
Dr Jayaprakash A Gosalakkal (aka Dr Jay), Consultant Paediatric Neurologist at the University Hospitals of Leicester was the first speaker. His subject was ‘LKS an Enigma’ where he shared his extensive knowledge and experience of LKS. The parents had lots of questions but the time was limited so Dr Jay kindly stayed on until after lunch to answer further questions.
Well if we thought we were learning lots from Dr Jay we were all in for a surprise when Dr Ritva Paetau from Helsinki followed. With her excellent command of the English language she engaged the audience with her presentation on MEG scans, the objectives and benefits. Then it was time for lunch. Hold on a minute we had all forgotten about the kids. Not to worry they were having a great time. After feasting on the buffet and finding out what the kids had been up to all morning it was back to the meeting room for the most exciting part of the day.
Yes, the AGM. There were no new nominations so all the existing officers and committee members we re-elected. Richard Budnyj gave a review of the charity’s success over the last few years, how it had achieved its objectives set by the new committee and how it was now focusing on fundraising and research. Steve King explained the accounts for the last financial year. Richard went onto say that the running costs for FOLKS were in the region of about £1500 per annum excluding events like the parents day. Income over the last few years had significantly outstripped expenditure which in the main was down to the excellent efforts of fundraisers. The Charity had also received one significant donation with a condition that it was used solely for research. FOLKS had also been speaking with GOSH about supporting the proposed research into LKS (as covered in previous newsletters). Richard asked the members if they supported the committee to push ahead with this course of action and using surplus funds to support GOSH. The general consensus was to fully support this important and urgently needed research. Richard pointed out that although FOLKS could make a significant contribution it was still some way of the £150,000 needed. The only way to achieve this was more fundraising and Richard asked the members to think how they could all help with this. He also asked for members to e-mail their ideas on what should be considered in constructing the information database for research i.e. possible common factors. The AGM closed.
Next up was Katherine Delargy who spoke about “Our story- with regard to pharmacotherapy”. Katherine and her husband Robert are both Pharmacists and have a son, Anthony, who was diagnosed with LKS and has now been well and free of clinical seizures for over 2 years. Katherine spoke about Anthony’s history and details of all the Anti Epilectic Drugs (AED’s) that had been tried. Katherines conclusion was that Monotherapy is often best option and should be tried before 2 or more AEDs are prescribed.
Last but not least were Maria Clark and Nicola Jolleff from Great Ormond Street Hospital (GOSH). Their Session was on Learning, Language & Behaviour and included an interactive session with the parents. This session looked at approaches and strategies that could be used in education and how to apply the theory. It was clear from the feedback that we could have spent a whole day covering this subject. This is something we will certainly look at for the future. The output from this session together with all the presentations on the day can be found here.
The meeting closed and time to find out what the kids had been up to. Happy smiling painted faces and a tired bunch of carers said it all. The day was a great success and can best be summed up by an e-mail received from one of the families attending the day.
“The day was amazing! We all (kids included) enjoyed it; thank you so much for the child care it was first class. Dave and I have not learnt so much in 1 day! The information was brilliant, and we have passed it on to our school. James' teacher is keen to see the completed copy of the education sheets that we got at the end”.
Finally a big thank you to all the guest speakers who gave up their time to attend, Cathy Cowie for sorting all the child care arrangements, the girls that looked after and entertained the children all day, committee members for helping with all the other things on the day, Matthew for managing the laptop all day and finally but not least to all the parents and children for attending. See you all next year.