Lissencephaly Contact Group

39 Barlows Road
Edgbaston
Birmingham
B15 2PN
England

Tel: +44 (0)121 455 0981

Hopefully you've had a reasonable summer, and you are now well into the Autumn term whilst managing to enjoy this delightful and unexpected warm spell.

The Family Study Day is falling into place - so I'm enclosing the details as we have them so far... !

It is to be held at the Apollo Hotel on the Hagley Road (A 456) - the westward continuation of Broad Street at " Fiveways " roundabout - and is less than a mile from the city centre. The details are enclosed and please phone the hotel if you require further more detailed travelling instructions.

Our two main speakers are Dr. Stuart Green - neurologist - in the morning and Dr Daniela Pilz in the afternoon.  Dr. Green will speak on neurological and developmental issues and mav include issues such as the effects of the variety of NMDs seizures, bowels, etc and if you have any particular areas of concern please indicate this on your reply sheet. Daniela Pilz will consider the genetics of NMDs and the implications of the variety genetically (including pachygyria and polymicrogyria in addition to lLS and MDS and WWS).  Daniela has spent much tome in the States working with Prof Dobyns and is now well respected in terms of considering scans and other information to determine types of NMDs.  Although she will sadly not have time to make individual consultations on Saturday 30th Oct. she has agreed that if you wish to see her at a later date could you bring with you your affected child's scan and any other information you have about your child. Daniela will then take it away with her and be fully prepared then for your later meeting.   It has been some people's experience that getting hospitals to part with scan images has been quite difficult - start the process early and don't give up .

There will be probably less than a dozen siblings attending (so far) aged between 2 and 12 - provision for them is a day out with a packed lunch. Whilst the cost of the lunch is covered, you will be responsible for funding their entrance costs, snacks souvenirs etc. - probably £10 for the day as this has to include the costs of the adults accompanying them. There are 2 possible activities a) Cadbury World or b) the Sea-Life centre. Obviously the group will stay together so whilst a preference can be stated the decision of the majority of children will have to be abided by.

For the very young and the affected children remaining in the hotel, there will also be a cost for staffing them during the day. Sadly I don't know enough people yet who will do it for nothing!! ( And why should they?) Again can I suggest £10 per child - though please if the cost would be prohibitive, please let me know - don't be anxious or feel you can no longer come.

The " formal" part of the day will finish at about 4p.m. - after a short (hopefully) General Meeting of the Group. However, if there is sufficient interest there is the possibility of having a hot sit-down meal together at the end of the day, say 5.30 or 6p.m.. The cost of a 3 course meal would be £15 per adult and £7.50 per child eating a meal. If you would like to stay to that. again, please indicate on the enclosed registration form.

Programme - Family Study Day - 30.10.99

The above information received and scanned in Sept 1999