Tony Hart raised £300 from the Hollingbourne Halloween Dance – Tony and his wife Janice have raised money for us before through dances so thank you once again.

In2Focus Development Services donated £100 on behalf of Antony Tinker who attended a Focus Group with them. Antony was our superb London Marathon runner last year so thank you for thinking of us again.

Gill Lloyd raised £380 running the Great South Run on 10 October in a time of 1 hr. 48 minutes – beating a team of Royal Marines! – a superb effort. Well done.

Norwich Union held a Dress Down Day, which raised £247.93 and Christine Spencer and workmates at Kavli, sent £25 raised from a friendly slimming club! Now there’s a thought.

The Duchess of Hamilton kindly allowed an Air Show to be held on her land and asked for £150 raised to be sent to the HMESG. Thanks also to Tracie Warren.

AM and KJ Goldrick donated £25, Mrs Betty Rodgers sent £25 donation and Andy and Michelle Mitchell gave a £20 donation during the Butlins weekend. Thank you also to Tina Read for her donation for Christmas cards.

Mary Witchard – mother of Gill Lloyd – asked for donations instead of presents for her 70th birthday celebrations and sent a magnificent £550. Obviously a much loved lady.Similarly, the parents of Judith Goldrick asked for donations in lieu of Golden Wedding presents and sent £530, another magnificent sum. Congratulations to all concerned for reaching these impressive milestones.

Pat and John Savage raised nearly £60 through cream teas with the Maiden Street Methodist Church – naughty but very nice!

A big thank you goes to all those who bought the lovely Christmas cards as well as those who continue to work so hard in selling the key rings and pens. Special thanks must go to Linda Grisenthwaite (£60 for keyrings), Andy and Michelle Mitchell (£60 for keyrings, cards and pens) and Jane Howard who is clearly a born salesperson managing to sell nearly £200 of merchandise. Well done to you all and thank you.

As normal, if we have inadvertently missed anyone, please accept our sincere apologies – your kindness is appreciated and we thank you. Please carry on the good work and let’s see if we can all think of any unusual ways to raise lots more money this year.

Noticeboard

Other Conditions
As a newish member to the Support Group I wondered if there were any other members out there that could help me in our recent news that our son Ryan has an additional condition that runs along with his HME and which appears to be just as rare. Although Ryan has exostoses on his hands and fingers he was also showing skeletal abnormalities elsewhere on his body e.g. long bones, elbows, femur, pelvis, and knees.

After recent x-rays were sent to London we eventually obtained a diagnosis for Ryan this week.

These additional bony changes are Endochondromatosis. We have been told that a child with both exostoses and endochondromatosis therefore has a diagnosis of Metachondromatosis. Have any other members come across either of these names before? Upon checking the Internet we have found that endochondromas are also known as Ollier disease although this term was not relayed to us. What is Ollier disease? How does this affect your child? How does this compare with HME? If any members have heard of either of these conditions or in fact Ollier disease could they contact me. My email address is member@spencerc.fsbusiness.co.uk. Alternatively my home telephone number is 0191 410 9235.

Your help in this would be appreciated.
Christine Spencer
 

Editor’s Note Ollier Disease is known to us and for further information visit the Ollier Disease information page of the Contact a Family web site at http://www.cafamily.org.uk/Direct/o12.htm.

Trouble in winter
Does anyone find that their condition is worse in Winter? My daughter has suffered a lot of pain these past few months especially in the bones in her fingers and shoulders? Her consultant's team doesn't seem to be interested but constant pain is starting to affect her schoolwork, sleep and play. She is exhausted all the time and spends all weekends on the sofa with hot water bottles! My email is helenandkids@msn.com.

What an achievement... Congratulations to Ceitidh Anderson, 9, from Isle of Arran who was honoured with one of Best Magazine’s WellChild bravery awards in December. Ceitidh, one of 10 children to be celebrated, was nominated by her Mum and chosen by the panel of judges for her bravery in continuing to dance despite the severe pain caused by her HME. Cietidh collected her award at an exciting evening held in The Porchester Hall, London which was attended by several celebrities, including Nadia Sawalha, Konnie Huq of Blue Peter and, of course, Father Christmas himself. Well done, Ceitidh and yet another example that HME does not have to stop you achieving results and doing the things you love.

Can you help? The Metro Centre, Europe's largest shopping mall, has in its many isles old- fashioned barrows where small businesses can sell their wares. The Metro Centre has allowed us 7 days within 2006 when we can both raise awareness of HME as well as funds by raffling soft toys. We will also be able to sell HME keyrings and pens. If any members have any items to donate or if anyone can make any soft toys, we would be very grateful. Please support us in this unique fund-raising activity.

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity. The HMESG cannot accept responsibility for any goods or services mentioned in the Newsletter.  

HME Support Group

HME Support Group
PO Box 207
Chester le Street
DH3 9AR
United Kingdom

Tel. +44 (0) 1438 861 866

Email: support@hmesg.co.uk
Web: www.hmesg.co.uk/

HME Support Group Trustees
Helen Small	Chair
Bianca Todd	Vice Chair
Judith Fletcher	National Contact Midlands/Wales 0121 742 3078
Barbara Gibbs	Secretary
Steve Harding	Treasurer
Sarah Nicholls	Conference Organiser
Debi Roper
Pat Savage	National Contact South 01305 772225
Dawn Searle	Fund Raising
Wendy Tollman	Newsletter Editor
Stephen Watson	National Contact North/Ireland 01204 699984

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