Volume 12 Issue 3 (56) Summer 2012
ECTODERMAL DYSPLASIA SOCIETY Unit 1 Maida Vale Business Centre, Leckhampton, Cheltenham, Glos. GL53 7ER England.
Tel: +44 (0) 1242 261332 Mobile: + 44 (0) 7805 775 703 Registered Charity No. 1089135
www.ectodermaldysplasia.org Email: email@example.com firstname.lastname@example.org
E D Society Christmas Party
We are pleased to announce the EDS Christmas Party will be held on
Saturday, 8th December 2012
At the fully air-conditioned
Thistle Hotel, Cheltenham
Childrens Entertainment including pantomime show, stories, music and a bubble machine.
Buffet and Father Christmas
Tickets - Adult 12.50, Children with E D & siblings free, other children 6.25
Family and friends welcome
(Please complete & return the enclosed registration form) Financial assistance is available towards travel and
accommodation on application The venue has ample parking and is close to the M5 motorway, about 1.5
miles from Cheltenham coach and rail stations and close to a range of hotels.
Medical Advisory Board Members
Prof. Angus Clarke - Clinical Genetics (MAB Chairman)
Prof. John Hobkirk - Prosthetic Dentistry (Implants)
Mr. Stephen Kaye - Ophthalmology
Prof. John McGrath - Genetics, Molecular Dermatology
Prof. June Nunn - Paediatric Dental Surgery
Dr. Helen Stewart - Clinical Genetics (IP)
Mr. Colin Willoughby - Ophthalmology
Mr. Martin Bailey - ENT
Prof. Michael Tipton - Human Applied Physiology
Prof. Nichola Rumsey - Psychologist
Dr. S. Aylett - Paediatric Neurologist
Mr Paul King - Restorative Dentistry (incl. Implants)
Prof. John Harper - Paediatric Dermatology
Mr. Michael Kuo - Consultant Otolaryngologist
Dr. Fiona Browne Dermatologist
Dr. L. Albery - Speech / Language Therapist
Paul Collacott - Chairman
Steve Preston - Treasurer
Diana Perry - Secretary
Mandy White - Air-Conditioning / School Liaison
Sue Beard - Accounts / Website
Julie Cox - Administrator
Fergus Gordon - Scotland
We are very pleased to welcome Sharon Cooper to the Board of Trustees. Sharon is married to Colin and has a daughter who has ED. She will bring a wealth of skills to the Board as she has a long background in publishing, significant skills in the internet, good business analysis, financial and project management skills, together with being a Mum of a child with ED.
Membership Forms and Symptoms Questionnaire
Please send back your 2012 Membership form ASAP, also if you have not completed a
Symptoms Questionnaire it would help us if you could do this by either downloading one from the website or requesting one from the office.
Sweat for Fred I've been doing Zumba in our local community centre for 8 months now and I love it! I wanted to raise awareness and pennies for the Society so thought a Zumba party would be a very fun way to do this!
My Zumba instructor agreed to give up her one day off (for free) to help. I sold tickets for 10 each which included 2 & 1/2 hours Zumba, buffet-which my dad supplied-raffle ticket and a ticket only prize
draw, to win a nights dinner, bed & breakfast stay at a hotel in St. Ives.
I emailed, called and begged local businesses to donate whatever they could to the raffle and had an amazing response with most prizes worth well over 50!! There were 30 of us on the day doing the Zumba and almost the same amount came to support us, we had a brilliant, if somewhat tiring, day.
Fred very much enjoyed watching us all shaking our stuff and thought his Daddy looked rather "cool" dressed in neon pink head & wrist bands and leg warmers!!!
We have only been living in our village for 6 months but everyone really helped and supported this event and showed a true community spirit. I can't thank everyone enough and it's a real pleasure to say we raised 1000.00 for the Society!
Thank you again to the Society for all their continued support, Fred is a very lucky little boy.
With love, Sarah, Jon, Fred (3) & Alex (1) Jones
Daniel Sanchez (aged 11) In April I planted lots of seeds - sunflower, viola, nasturtium, poppy, forget-me-not, pea, lettuce, courgette, tomato, runner bean, French bean, rocket, broccoli, radish, beet root, cauliflower, sprout, mange tout, carrot, spring onion and even more!
It was very cold that day but it was worth it. Soon we had lots of little seedlings ready to be sold.
At the end of May, we printed leaflets and delivered them in our neighbourhood. My friends Aimee and Rachel helped me to decorate posters for the ED Society and we set up a stall in our front garden. It was a lovely sunny day and lots of neighbours and friends came to buy plants.
We also had a raffle and sold tickets to win prizes. We had a lot of fun and raised 200 for the ED Society. Some people asked what Ectodermal Dysplasia was and I told them about me. Lots of people have asked when we are doing our next sale!
Daniel youre a real star - thank you so much for doing this for the Society
School Health Care Plan The ED Society have now created a standard School Health Care Plan to help
parents obtain the correct care for their children in schools. The document covers many symptoms of the dif-ferent ED syndromes and can be amended to suit individual children.
For a copy please contact Diana in the office email@example.com or download it from the members section of the website.
The Chudleigh Kitchen is born
For many years we have used catering as a way of raising money for charity. The first time we did it was when Mark was a student at Cambridge, and we made pancakes on a barbeque set up in Kings Parade to raise money for the Rag. More recently we have regularly done fund-raising BBQs, and over the past few years have held a number of themed meals in aid of various charities. In these, we invite up to 16 people to a three course meal, including wine, at 20 a head. The latest of these earlier this year, an Italian Evening raised 175 for the ED Society.
Around Easter, the doorbell rang one evening, and on the doorstep were a couple who we vaguely knew. They announced that they were getting married in July, and wanted the profits from the wedding reception to go to a worthy cause, rather than the bank balance of a commercial caterer. They knew we did charitable catering from time to time would we do their wedding? Gulping somewhat, we accepted the commission to do a buffet meal for 110 people in a the local Community Hall (otherwise known as the primary school hall!) at 15 per head. We enlisted the help of a number of young people from the local church We Love Chudleigh group who agreed to help with serving the canaps and clearing tables etc. All went very smoothly, the couple and guests appeared very happy with their meal, and we made a profit of 900 for the ED Society.
In the lead up to this event, we decided we needed a more formal framework for our catering activities and began to call ourselves The Chudleigh Kitchen. One of our daughters bridesmaids is a graphic designer who designed a logo for us, we then had some business cards and polo shirts made with the logo. So with the wedding behind us, and our new logo and purple shirts, we are eager for more business!
Mark and Vicky Macnair
Family Fund The Family Fund is a registered charity covering the whole of the UK and mainly funded by the national governments of England, Northern Ireland, Scotland and Wales.
Formed in 1973 by the UK Government to give practical help to families with severely disabled children under the age of 16. For over 20 years the Family Fund operated under
the wing of the Joseph Rowntree Foundation but in 1996 became an independent charity.
Today they are the largest independent grant-giving organisation helping families across the UK who are raising a disabled child or young person with additional complex needs or children and young people with a serious illness. In 2011/12 the Family Fund provided support to some 59,000 families who live on the lowest of incomes while caring for disabled or seriously ill children. They remain most grateful to the four UK governments for their funding, which provides a lifeline for many families.
They help families lead ordinary lives by providing grants for things that families tell them they need and that make life easier for the disabled child, young person and their family. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together.
Applications for a Family Fund grant can be made by the parent or carer of the disabled child or young person. Young people aged 16 and 17 can make an application in their own right. Applications should be made per family.
The website is - http://www.familyfund.org.uk
Dont forget - the summer months are great times to hold