May 1997 Newsletter

 

  • Details of the forthcoming FSP Group Meeting.
  • A map showing the location of the above event.
  • A Booking Form for the meeting/Membership Renewal Form/Committee Member Nomination Form/Data Protection Act Disclaimer Form.
  • A copy of the proposed FSP Group Constitution.

FSP Group Meeting

The details of this event remain as announced in the circular sent to you earlier this year and dated 25th February 1997. The full agenda is detailed in one of the sheets accompanying this Newsletter. Coffee, tea and a buffet lunch will be available on pre-payment of the appropriate cost. Please use the enclosed Booking Form to indicate your intention to attend, and your refreshment requirements.

The late-morning session will be taken up with the First Annual General Meeting of the FSP Group. A copy of the proposed Constitution is enclosed for your interest. If you wish to make any suggestions regarding the adoption of the constitution, please do so using the enclosed form. If the Constitution is adopted, then the Meeting will be asked to elect a Committee. All existing Committee Members will be standing down in order to give other Group members an opportunity to stand for all positions. Existing Committee Members may or may not choose to stand again for nomination. The following appointments are available:

  • Chairperson
  • Secretary
  • Treasurer
  • Newsletter Editor
  • Help-Line Manager

The new constitution allows for individuals to hold more than one appointment should there be insufficient volunteers ! Please use the enclosed Booking Form to nominate yourself for election to the Committee.

May I take this opportunity to inform members that at present I do not intend to seek nomination for office, and therefore there will certainly be vacancies that need filling. Should you wish to know more about what may be involved, please do not hesitate to contact me.

After lunch the Meeting will move on to Talks and Seminars. We are hoping to entice back to our midst Doctors Nick Wood and Evan Reid. Dr Wood is Senior Lecturer in Clinical Neurology at The National Hospital in London, and is the Group’s Medical Adviser. Dr Reid is a Clinical Lecturer in Medical Genetics at Addenbrooke’s Hospital, and is currently at the forefront of research into FSP in the UK.

At last year’s Meeting, many members expressed the view that they would have liked more of an opportunity to meet and talk with fellow FSP sufferers. Hopefully, this year’s agenda will provide such opportunities, whilst at the same time offering sufficient professional input to satisfy our permanent hunger for answers....Please support this Meeting if you can.

Subscriptions

Yes, it’s that time of year again ! Our membership year runs from the 1st June to the 31st May in the following year. Subscriptions are to remain at the same level as previous years, specifically:

  • £10 per annum for waged family heads
  • £5 per annum for unwaged/retired members
  • £0 per annum if your circumstances dictate.

To all members who have recently joined part way through the year, but paid a full year’s subscription, the renewal rate is 50% of the above annual rates, or as individually negotiated.

Please appreciate that the Group operates an extremely ‘open’ policy towards membership. Our funds are used for all administrative costs, Newsletter production costs and the subsidising of events - for example, the room hire at the July Meeting will be paid for out of funds.

Again, please use the enclosed multi-purpose Booking Form to renew your membership.

The Data Protection Act

In order to escape the provisions of the above Act, it is necessary to ask you to sign and return the enclosed DPA proformas. Because the Group holds members’ details on computer, under normal circumstances it would be necessary to register the Group as complying with the legislation contained within the Data Protection Act. However, we can remain exempt from these provisions providing the data held is limited to only name address and telephone number (- it is ! ), and that each member signs a form agreeing to the retention of this information. Please sign the same multi-purpose form if you concur. And yes, I do agree, it is a pain in the ....

I am indebted to John Moore for writing this next article.

"Presently 58, and managing to walk with two sticks, I am still holding a management position with an Insurance Company in Portsmouth. I have served them for 28 years.

Apart from the problem of ‘toe-kicking’ and distinct gait while walking, I suffer no other major problems yet, except that standing up from the occasional fall is less easy now, and I do experience those features of urinary urgency and retention.

I enjoyed a very active youth, playing as many sports as possible. People told me I had a ‘funny walk’, but I was not really aware of it. My father and his brother, their father and his brother were all similarly affected, but only my father’s brother was distinctly handicapped by it. However, all lived until their late 80’s or 90’s. None of us had been diagnosed as suffering from FSP (or anything else for that matter). My uncle had several tests including the dreaded lumbar puncture, without diagnosis. All of us enjoyed an active early life.

The story of FSP came to us after the birth of my son, Ray, who has never achieved the ability to walk on his own. By age 3-4 he was just showing some ability to manage 6 to 10 steps awkwardly. Unfortunately, he barely improved, but by then we had a good physio team behind us, and hopes were alive. When he was approaching age 6, we were then offered the stretching of his adductor tendons. The physiotherapists warned us "Don’t let them cut him." He had to be anaesthetised for the night whilst his thighs were stretched apart, so my wife and I asked of any other procedures... and asked them to confirm that they would not cut. In signing for the anaesthesia, as it happens, we signed our rights away; we had nothing else in writing but they did in fact cut the tendons. This destroyed all of the progress we had been making. Our task then was to teach Ray to walk with sticks, which took some time, and he has never been particularly good at it.

Now aged 35, Ray still copes with sticks indoors at home, but he’s almost entirely reliant on a wheelchair elsewhere. He has been driving a hand-controlled car for 16 years.

I have two unaffected sisters. There were no females affected in my father’s or grandfather’s generation, and we formed the notion that this was a ‘male only’ disease. My own daughter is also unaffected. Not until I heard of the FSP Group through a friendly neurologist did I have any knowledge that both sexes could be affected."

If you would be willing to ‘tell your story’, please drop me a line. Your anonymity can be retained if you choose. I have no doubt at all as to the impact that stories like John’s will create.

News Snippets

  • Doctor Evan Reid wrote to inform the group that his unit has just been awarded a grant of approximately £30,000 from the Medical Research Council to partly fund their research into FSP. The money is to carry out genetic analysis to ascertain which of the known genes are involved in causing ‘pure’ FSP in British families, and to try to narrow down the location of these genes.
  • The Genetic Interest Group is holding a ‘Sibling Conference’ in London on Thursday 15th May. The meeting will focus on the special needs of siblings of children with a genetic disorder. More details are available from Jennifer Wiggins of GIG on 0171 430 0090
  • The Council of Europe Convention on Human Rights and Bio-ethics. New EC regulations governing research using human embryos is likely to be much stricter than before. If the UK were to sign up to the convention as it stands then embryo research would be significantly curtailed, with huge implications for families with genetic disorders. The UK already has strict laws regulating this area of research, and it is open to the government to exempt the UK from these aspects of the convention. GIG is asking all members to exert pressure on their MPs to exclude the UK from the specific clauses restricting embryo research.
  • Sippy Azizollah is willing to entertain any suggestions as to how to raise money for the Group ! All ideas, no matter how zany, to Sippy please.

And Finally...

Please do complete the Booking Form with all its various sections - whether or not you are able to attend the July Meeting. One cheque for both the Event and Membership renewal is perfectly acceptable; cheques should be made payable to ‘The FSP Group’. Please return the forms to me at the address given on the proforma. I Look forward to seeing you in Birmingham.