In the interim period HMESG is required to hold an AGM in 2004. This will take place on Saturday 1st May 2004.

Next year we have decided to combine our 2004 AGM with an afternoon seminar in Edinburgh. All of our members will be very welcome. The reason for travelling to Scotland is to provide those members in Scotland and the north of England, who may not have been able to travel the long distance to Birmingham, the opportunity to meet other families, adults and children affected by HME for an informative, interesting and sociable afternoon.

The minutes of the AGM will be published in the following newsletter along with a report on the seminar.

At the time of writing we are confirming our meeting facilities in Edinburgh. The proposed format is for an afternoon start around 2.00pm. There will be three speakers and the AGM, with the meeting closing around 4.30pm followed by a buffet tea. A local hotel will be recommended for anyone wishing to stay Saturday night.

For members travelling with children there will be a crèche/workshop during the afternoon whilst the meeting is taking place.

It is hoped that if successful we will establish the seminar as a regular event attached to the AGM in between holding our conference every other year. It is also our intention to consider travelling to other far-flung corners of the UK!

A formal announcement on arrangements for the AGM and Seminar 2004 - Edinburgh will be made in the New Year.

Sarah Nicholls

Fund Raising Ideas

from Dawn Searle

We need help in raising £4,000 for your next Conference!

Can you help us raise funds and awareness for your Charity?

To continue to hold conferences we need to raise lots of money. PLEASE HELP.

Possible ideas
Below are a few ideas.

Perhaps you could arrange a Coffee Morning, either for Mums and toddlers, Nans and Grandads or just friends.

Pens
We have pens with HME Support Group logo printed on them. These are available for purchase at £1.25 each (blue or black ink). Why not buy some and sell them on?

Fête
A good idea may be arrange a Fête in your local hall. Perhaps your local church would like to organise one on behalf of HME.

Cakes
Ask your friends if they can make Cakes and donate them for you to sell at a fête.

Tombola
If there is a fête being held near you, perhaps you could organise a Tombola.

Boot Sale
How about organising a Charity Car Boot Sale? Find out how much other local boot sales charge for sellers/buyers, charge a similar amount as a donation towards the charity or have a clear out and have a stall.

School Christmas Play
Why not ask the Head Teacher if you can pass a bucket or charity boxes around the audience at the School Christmas Play? By putting HME leaflets on the seats before the play, awareness of HME will also be increased.

Dressing Down Days
Can you help by holding a Dressing Down Day either at work or school? Speak to your Manager/Head Teacher and show them our newsletter and leaflets. Then if you all wear suits and ties to work, arrange for everybody to wear casual clothes or fancy dress for one day, ask for a donation of £1 or more towards HME.

Christmas Cards
Do you find writing all those Christmas Cards to the people who you work with a chore? If everybody agrees, how about making a donation to HME rather than buying cards and having to write them to each other. Just think of the time saved. It will also make everyone in the office aware of this rare condition.

Fun Run
For those of us who are fit enough, maybe you could enter a local Fun Run? We could get some sponsor forms printed and help raise funds. How about entering a team?

Local Pub
Ask your Local Pub to help. Perhaps they could organise a karaoke night, race night or disco. Tell them that you will help to bring people in.

Disco
Hold a Disco at the school or village hall. Good times for these are at Christmas, Valentines or Halloween. If they have a theme, people can come in fancy dress. It's great fun.

Raffle
Don't forget the good old raffle. These can be held at most of the events listed here. Get people to donate unwanted presents and raffle them before Christmas.

Voluntary Subscriptions
By donating a Voluntary Subscription for membership every year, this will provide a regular source of income.

Remember, it doesn't matter how small the amount of money is raised (50p donated to us is 50p we didn't have). Don't be afraid of organising a fund raising event, even if you have never done one before. The ideas listed here vary from small to large. One thing is certain - you will have loads of fun, possibly make new friends and gain the satisfaction of knowing you are helping us to arrange the next conference.

If you need any help or advice on organising a fund raising event contact me (Dawn Searle) on 01438 861866. I am willing to attend and say thank you at your event.

Working with HME

I have been working for most of my adult life. Managing HME in the work place has been, in my case, a steep learning curve. Within the workplace I have come across a great deal of misunderstanding of HME and its affects. I have even experienced a degree of discrimination albeit based on ignorance. The information on the HME Support Group website has been invaluable, as I have used for example an information sheet for schools. Supplying basic information to my employer.

Most public sector or large employers have a procedure and support for those who are disabled. If like me, I do not see myself as disabled, however in reality I do have a disability, because of my HME I have shorter arms, bony bits on legs etc, ache a bit and look different too.

Below I have some tips that you might wish to consider in dealing with HME in the workplace.

Each employer has an "equal ops" or "diversity" policy. You can tell your employer that you have a disability. You do not have to be registered disabled. Speak to your manager or failing that the Personnel Department who should put you in touch with an Occupational Health Advisor. A health and safety and risk assessment should be carried out on your workspace and environment. You can ask for specialist chairs, VDU and desk equipment including mouse mat and wrist rest. I have a chair, which aids my back and shoulders, a wrist rest and mouse mat and a roller ball mouse. I have a split keyboard to aid typing so I don't have to raise my elbows to type - or maybe your need is for other types of help.

Your Occupational Health advisor will know where your local Disabilities Support/Action office is. They can part fund any additional equipment you may need.

It is important that you get the best advice. If there is a Union within your workplace, join it, even if you feel that your union is non supportive in employment matters they will do their best and they do know the law in relation to disability and can support you in a pro-active way. To my knowledge most unions have specific support for employees with disabilities.

So let's recap:

• Tell your employer that you have a disability
• Give them information
• Speak to the Occupational Health Department or an advisor
• Speak to your supervisor/ manager
• Get a Health and Safety risk assessment carried out
• Join a Union

With a little bit of determination and positive action it is surprising what you can achieve. There are many good and informative websites. You might want to have a look at the following ones.

www.which.co.uk - keyword disabilities
www.disability.gov.uk
www.daras.co.uk

Sue Berthe

...what an informative and valued letter from Sue, many thanks for your time and effort...

Noticeboard

I am writing regarding the theory that HME stops at puberty going on my own experiences.

My son who is almost 20 got through life with just minor lumps on his knees, shoulders and fingers. That is until six months ago when he noticed a small lump on the base of his spine and another on his tailbone, which has now grown to the size of a golf ball. He finds it difficult and painful to walk, sit and work. He has had his scan and now awaits surgery.

We, as parents, are now worried for the rest of our children.

After speaking to a consultant I was told that the spine is the last bone in the body to mature, early 20's for girls and late 20's for boys. It now means that HME has taken on a whole new dimension for us.

I do feel as a parent of children with HME that there should be better medical advice available. What does anyone else think?

Carolanne and Iain Anderson

...please reply via the newsletter...

We are often asked whether HME is related to other conditions. One of the areas we have been particularly aware of and have mentioned in previous newsletters, is that of excessive tiredness. Recently one of our members, Vanessa Lott, came to us with the suggestion of producing a Questionnaire to canvass the important questions that Members have in connection with HME. Please see Vanessa's letter below..

Hello everyone

As I am sure, some of you have encountered difficulty in getting "support" from outside agencies because they don't understand what HME is and all the complications it can cause. I find that most people don't understand that you can do something one day but not the next and the discomfort it can cause.

In my family we have a strong family history of HME and different degrees of learning difficulties (dyslexia). I am interested to find out whether there is a link between HME and other disorders (no matter what they are).

This is where you come in.

At a later date, we hope to send out a letter asking for support for a working group and a questionnaire for more information.

If the results seem to point to any other weakness then maybe this can be further looked into and researched. Ultimately, if there are any proven links to other disorders then the aim is to get "an extra arrow in our bow" and try to highlight any other help that you may need. Though any results may prove pointless for the older generations, they may prove vital for our children and grandchildren and help to ensure further aid they may need to make their lives easier.

Vanessa Lott

.and look out for further information which will be sent under separate cover!

Calling all Grandparents!!!
We would love to receive articles for the newsletter from grandparents of those families affected by HME. We know there are many in our membership and would very much like to hear from you.

Next: Out and About
Previous: Case Histories
Back to: Newsletters