About the group
The Hereditary Multiple Exostoses Support Group was founded in September 1997 by Christopher Clarke, Dawn Searle and Helen Small, all parents from affected families. In March 2002 it became a Registered Charity (Registration Number 1091069). The Group is entirely supported by donations and voluntary subscriptions.
Our Support Group is a great aid to those families who have either been recently diagnosed or as a constant source of comfort. The effect on the whole family can be stressful at times and the Support Group is there to help alleviate some of your feelings by sharing them with other families in similar situations geographically. We have a helpline which is available seven days a week and we can offer email support. Please see our contact page for further information.
Our website is very informative and contains an abundance of helpful topics for you. We offer positive advice and support on experiences. We also have an International Noticeboard section for members where individual members can place their stories for feedback from other members. We also produce a newsletter every six months detailing up to date information, research findings and forthcoming events.
We organise regular Group meetings and conferences with medical speakers who give talks on aspects of HME and related topics. The location of these meetings is varied to reach as many members as possible. This gives our members the opportunity to get together and to learn more about the condition.
We currently have approximately 380 families registered with our Support
Group.
We are a member of GIG a Genetic Interest Group who are a national association
of patient organisations with a membership of over 130 charities who
support children, families and individuals affected by genetic disorders.
One of their goals is to promote awareness and understanding of genetic
disorders
At present we have 11 trustees who serve on the Committee including myself, secretary, treasurer, research developer, fundraiser, website developer and three national contacts based throughout the United Kingdom who are responsible for initial contact with new members, sending out new membership packs and up to date HME literature. All our committee members are volunteers who are connected to HME either themselves or via family members. The Committee meets twice a year and holds regular teleconferences. In between meetings any big decisions that require committee approval are normally done either by email or telephone.
Group aims to adopt a positive approach to the support and care of families and individuals affected by HME. We endeavour both to educate and learn more about the genes that cause HME. Our overall aim is to make a difference to people affected by HME.
Aims of the HME Support Group
- To offer support to families affected by HME
- To link families in similar situations and geographical areas
- To provide up-to-date information on the condition
What does the Group offer you?
- A sympathetic contact point for those newly diagnosed
- Linking with others similarly affected
- Information on the condition and up-to-date research findings
- Regular meetings of the Group
How can you help us?
- Support the Group by becoming a member
- Make a donation to the Group
- Share your experience and information
- Write an article for our newsletter
- Hold a small fund raising event such as a coffee morning
20 Fundraising Ideas
1. Dressing down day/Fancy dress/ or non uniform day
- always one of the best ways to raise funds.
Very easy to organise, good fun and can raise a lot of money, with little
work involved.
This can be done in both schools and work places. Speak to the school’s head or management and ask permission then set a date; speak to Christine regarding group leaflets to hand out, produce a letter raising the profile of HME to give to everyone Ask everyone to put in a minimum donation of £1.
Raise Awareness Week is 15th October to 21st October. This is the week
before schools break up for half term, so it’s a good time to do something
that week when they are winding down.
Especially for Schools…
2. Do a competition – e.g. “who’s this baby”? This is where teachers/students bring in pictures of themselves when they were babies and entrants put in a £1 to guess who is who. Why not put them on a board and have a prize for the winner, Maybe someone can donate some chocolates or smellies and if there are several winners put them in a hat and pick one out. It’s very good fun and a great laugh.
3. Events – e.g sponsored silence, maths, spelling, keep fit day etc. Or for the little ones, why not have a teddy bears picnic at playgroup where they bring a £1 per teddy.
4. Fete or fair - if organising one is too much, why not ask an existing fair if you can have a stall in aid of HME. You could sell our pens, key rings, Christmas cards, along with others items like toys, games, clothes.
5. Swop shop - bring in an item that you don’t want anymore, pay £1 then swap with someone else.
6. Hunts – e.g treasure hunt or Easter egg hunt.
7. Make a snake - ask everyone to bring in all their loose change and coppers and make a snake in the in the playground with it.
8. Recycle fashion show - ask students to make dresses and garments out of waste material. It’s great fun and you could charge £1 to take part and 50p to watch.
9. Christmas play - why not ask the
head teacher if the retiring collection can be for HME and you put leaflets
about the charity on the chairs before the play - gret for raising awareness.
In the workplace or at home….
10. Christmas cards - Do you find writing them to everyone at work a chore? Why not suggest that everyone put the money they would have spent on cards into a charity of their choice instead. If there are several nominated charities put them into a hat and draw one out. Change your charity each year.
11. Local pub - ask your local to help. They are always keen to drum up business, especially mid week, so maybe you could organise a karaoke, race night, quiz or disco. The venue is free of charge you just need a DJ and some leaflets and hold a raffle bring your friends, you may even get a 10% cut from the bar, Ask - you could have fun while your raising money for HME .
12. Fun run/ Marathon - for those of you who are fit, maybe you could run or walk in a local fun run, we can do you sponsor forms for you, maybe you would like to enter as a team.
13. Organise a disco - everyone likes
a boogie and you could always theme it to add to the fun. What about a
60’s, 70’s, and 80’s night, or fancy dress, schools uniform, rock & roll,
Valentines, Halloween or whatever you fancy. Or you could do karaoke -
like an x factor. If you need help we are here.
14. Voluntary Subscriptions - just donating
a voluntary subscription for the membership every year helps provide a regular
source of income. If you haven’t done this for a while, please call or email
us.
15. Raffles - in office/at a disco/fete. Raffles are always a great and easy way of fund raising. Ask people & friends to donate unwanted Christmas presents and raffle them.
16. Party - have a garden party, BBQ or house party. Invite your family & friends and get them to help bring food and drink and pay an entrance fee. Play games, Karaoke, competitions and charge.
17. Coffee & cake morning - invite neighbours in or Mum & toddlers. Great way to catch up with people while raising money.
18. Hold a church fete or fete - in a local hall invite people to bring in car boot stalls and charge them £10 a stall.
19. Car boot sale – have a stall for HME. Speak to the organiser as sometimes they charge charities less to have a stall or maybe you could have a tombola.
20. Donating money - lately we have had family members getting married/ big birthdays who didn’t need any presents, so kindly asked their friends and families for donations to the charity instead, which is so touching.
Raise Awareness
There is just one more thing if you think raising awareness is something you would be good at. Why not try and get your story in the local newspaper or, better still, a magazine. This will help raise the profile in the media, hopefully finding new members that never knew we existed. One word of caution, though - before you do this, please contact the HMESG first so we can advise you on how best to approach it and we would need to preview and article before it goes to press.
Finally…
Remember that it doesn’t matter how large or small the amount of money
raised - every little helps. Don’t be afraid of organising a fund-raising
event, even if you have never done one before.
The ideas listed here vary from large to small. One thing is certain,
though - you will have loads of fun, possibly making new friends along the
way and gaining satisfaction of knowing you are helping us to raise money
for research and fund our next conference.
Please call :- 01438 861866 HME Support Line with your name and telephone number and tell us what you would like to do and what you would like the money to go towards (research or conference). Please bear in mind we do need money to run the next conference and if all the money goes towards the research we will not be able to have a conference until enough funds come in for this.
Thank you so much for your time, I hope there are some ideas here that could help you raise funds, remember you are not alone and we are always here to help you.
Many thanks