August 1997 Newsletter

 

Where did it all start?

I am sure this is a question most members of the FSP Group have asked themselves. At the Group meeting in London, September 1996, someone asked if it would be worthwhile pursuing family history. Dr Evan Reid suggested that if we were all to chart our family histories we may well find we all had a common ancestor way back in the 16th / 17th century.

For very many years I have found family history an engrossing and interesting hobby. About ten years ago, when I came to realise that we had a ‘problem’ in the family, I started trying to make contact, internationally, with others whose families had the same condition. Several people contacted me, mostly Australians (perhaps because they are very enthusiastic family historians), some from N. America, one from South Africa, none from the UK, but no-one was similarly affected. I had hoped to find someone who shared one of my family lines but had no success.

I know the condition is inherited from my mother’s family. For approximately 15 years before her death in 1961, my mother was treated for arthritis. She had great difficulty moving her legs. In time the realisation came that she had experienced the same difficulties as members of my generation. My mother was the youngest of four children. Her father died when she was only a few months old as a result of falling down some steps. The inquest was inconclusive. I have often wondered - was his balance poor? Did he have difficulty using his legs? I shall never know. I am not aware that any others of his generation had a problem. Death certificates sometimes give clues, but I have not obtained them. It is too sensitive a matter to raise with descendants of that side of the family whom I do not know. My mother’s maternal grandmother had ‘Paralysis’ as the cause of death on her certificate; that was in 1879 at the age of 76. Could she have had a stroke? - who knows?

In the1851 Census I found two young brothers recorded as ‘Cripples’ who had the same surname as my paternal great grandmother. They were in the appropriate area, but I have not attempted to sort out their ancestry. Perhaps I should; they could be significant.

My maternal grandfather’s ancestry is principally based in the West Riding of Yorkshire. My maternal grandmother’s ancestry involves the East Midlands area.

Is there anyone out there who would like to co-operate with me in this search? I would be happy to correlate any information/details supplied and would respect any requests for confidentiality. If some of us can find some common ancestry it would be quite a breakthrough. If anyone would like any advice/guidance on getting started, or taking knowledge further back I will gladly supply some details. I can also supply two record sheets which are useful for recording family details.

I hope some, if not all, of you will be tempted. I am sure that by increasing our knowledge, in any way whatsoever, we may help to find a means of improving matters for future generations.

Audrey Town, 33 New Lane, Skelmanthorpe, Huddersfield HD8 9EY

FSP Meeting in Birmingham - 26 July ‘97

The second meeting of group members took place at the Birmingham Disability Resource Centre last Saturday. 47 people representing 18 different families attended the all-day meeting. Following suggestions made after the ‘96 meeting, plenty of time was available for members to meet one another, the buffet lunch providing an excellent vehicle for interaction.

The main events of the day were the Group general meeting in the morning, and the presentations and discussion groups led by Doctors Nick Wood and Evan Reid in the afternoon.

Group General Meeting signals ‘No change’

A draft constitution had been circulated to all members with the February Newsletter. Feedback/comments had been requested, as had nominations for the new, democratically constituted committee. The response had not been good. The meeting therefore discussed the value and benefits of adopting a constitution, whilst recognising the difficulty of fulfilling all of its clauses. In particular, the meeting discussed the aims and objectives of the Group. It was deemed important that these reflected the true spirit of the Group. The adoption of the constitution was further complicated by the lack of nominations for the new committee.

Three options were placed before the meeting:

  • Adopt the constitution in toto, but then fail to appoint a full committee.
  • Postpone the adoption of the constitution pending a more favourable ‘climate’.
  • Adopt the constitution as a working guideline for the operation of the Group, but issue discretionary powers to the committee to suspend those clauses of the constitution that are at present deemed unworkable. These special powers would be assessed each year, and only renewed if no new volunteers were willing to join the committee.

There was unanimous support for the third option.

Voting then took place for the committee. There were single nominations for the posts of Treasurer and Help-Line Member. Mike Fawcett and Stephanie Pengelly were duly elected to these posts.There being no volunteers for the posts of President / Newsletter Editor / Secretary, the retiring member offered to remain in post under the terms of the ‘Special Powers Act’ agreed earlier.

If this all sounds like a fudge, it is. However, it does have certain advantages over the old system; these are:

  • a clear ‘mission statement’ - the aims of the Group are set down in the constitution, and define our purpose as being primarily supportive. We have, for example, no remit to lobby politicians, to make demands of medical bodies, or do anything other than help each other by our established means.
  • A degree of transparency.
  • An established procedure for the nomination and appointment of committee members.

The Treasurer and the Help-Line Member then gave the meeting their reports. Full details of the group’s finances are available from Mike Fawcett. The Group enjoys a reasonable surplus, and membership subscriptions are unlikely to change.

To co-ordinate the activities of any fund-raising done on the Group’s behalf, Sippy Azizollah offered her assistance.

Doctor Nick Wood opened the afternoon session. He outlined the history of the condition, the nomenclature used, and the main features. Nick took the Group through the various FSP classifications, and also re-introduced us to the ‘pure’ and ‘complicated’ forms of FSP. Nick fielded an array of questions from across the FSP spectrum. These included questions on eyesight, on digestion, on bladder control, on cognitive function, on reflexes, and of course, on inheritance patterns.

Doctor Evan Reid followed with a presentation on the genetics of FSP. Evan gave the group a basic explanation of genes, DNA and their place in understanding inheritance patterns involved in the passing down of FSP. Of the categories of genetic transmission, ‘autosomal dominant’ is the commonest, affecting some 70% of families. ‘Autosomal recessive’ is the second-most significant category, affecting about 20% of families, whilst ‘X-Linked’ (which only affects males) is the least common. Dr Reid informed the Group that significant advances are taking place in the understanding of the biology of the condition, and it may soon be appropriate to classify the various types of FSP according to the affected chromosome, as opposed to age of on-set. The clinical features of the symptoms do seem to be "gene true".

The Group then split into two - each doctor conducting a question and answer session covering the whole spectrum of FSP-related topics.

The gratitude of the whole group go to Gordon Langford who was the man responsible for all the organisation and catering of the Birmingham event. Also, of course, our thanks to Nick Wood and Evan Reid who made the meeting a resounding success. And finally, on a personal note, my own thanks to all the members who attended, many travelling considerable distances and in some difficulty, without whose support the meeting would not have taken place. See you next year!!