fanatic but has never tackled long distance running. She went into training last summer and will be ready to “do the distance” on the day! Anne has applied to run as a Sense “golden bond” runner that means she has to raise a minimum of £1,400 for Sense, but anything she raises over and above this will be donated to the CHARGE Family Support Group. She has a committee from her local gym helping her with training and fundraising, but is also appealing to anyone within the Group who may like to sponsor her.

Anne is finding the training pretty tough (quite understandably). When I asked her why she was putting herself through it, her response was that when she attended the last day of the CAUSE conference for the CFSG AGM she was moved by the closing speeches (of the conference) and on meeting many of our families. Anne is an accountant, a career woman and was going through a few personal problems when she came to the AGM. She says that she just wanted to help as these problems were put into quite a different perspective when she met some of the children with CHARGE and the parents who would move heaven and earth for them.

You can sponsor Anne by any of the following options:

§ Phone her on 07798 690374;

§ E-mail Carol Thomas on cajthomas@btinternet.com (Anne does not currently have an e-mail address);

§ To sponsor her online (from mid February onwards) go onto the SENSE website;

§ www.sense.org.uk/londonmarathon/runforsense/participants.html and look for her name or go to http://www.justgiving.com/ – follow the Sponsor a Friend link and type in her name.

NOTE FROM THE CHAIR – Carol Thomas

As we are at the start of the New Year I thought that it might be a good idea to reflect on the happenings in the Group during last year.

A number of us joined the committee for the first time in January 2003 (myself as Chair, Simon as Newsletter Editor and Barbara as Secretary) and for everyone in the committee it has been a busy year.

Thanks to Simon’s hard work we have an excellent newsletter that goes out quarterly; there has been wonderful pen portraits of our children, interesting

articles, stories, useful links and information. Everyone particularly Simon is working hard to keep this going.

There was the CAUSE Conference at the end of March. This for everyone who attended was a really positive and inspiring experience with over 20 families participating. The Group was able to offer a subsidy for families to attend and worked very closely with SENSE and the international parties involved to make this a success. It was a massive project - particular thanks to David Levey for the huge amount of time he put into this.

Hanna Levey has been our mainstay as the first point of contact for new families with CHARGE and thanks to Andrea’s work on the website we received many email enquiries from new families, friends of CHARGE families who want to help and occasionally professionals.

We ran a successful Family Day in Manchester in June with 18 families in attendance and for the first time had sufficient funds to pay for families from further afield to stay over the night before to enable them to attend.

I had an interesting year as Chair even with the time constraints of having a young toddler (now 20 months) and some quite significant health issues with my Jamie my 4½ year old son with CHARGE. Although I didn’t manage to complete all the tasks I set for myself, I feel that I have at least achieved some of the things I set out to do for the Group in that I managed to do the following:

§ worked closely with SENSE for the two months running up to the Conference and organising the Manchester family day;

§ have carried out much research and recently some training on finding and applying for funds for the Group;

§ have networked with many families in person, on the phone and by email;

§ am writing a Business Plan and budget for the group based on all the projects that members have asked us to start working on. These include a teen/young adult network, information on transition, a questionnaire on growth, growth hormone, delayed puberty etc, a CHARGE handbook and various types of social events;

§ recently had a meeting with SENSE to discuss how we can work together with them to achieve some of these goals. The idea being that instead of working on single projects as we have in the past (such as the CAUSE Conference) we can link with them on some joint events and utilise the resources they have and we don’t.

We had some great fundraising efforts from Support Group members – please see FUNDRAISING further on in the newsletter. Thanks everyone.

DAVID BROWN’S REVIEW OF 2003 - CHARGE ON A ROLL IN 2003!

This has been an important and exciting year for anyone with an interest in CHARGE Syndrome, and I have been able to be involved in most of the exciting meetings that have helped to advance our knowledge about this extremely complex and challenging condition, while also helping to put it more firmly ‘on the map’. It is extraordinary to think that in less than 7 months we have had the first ever European CHARGE meeting in Hinckley in March, the 6^th International CHARGE Conference in Cleveland in July, the 13^th Deafblind International World Conference in Toronto in August (including 10 CHARGE presentations compared to none at all at the last conference four years ago and a meeting of the DbI CHARGE Network) and the US National Deaf-Blind Project Directors’ Meeting in Washington DC in October (with a keynote about CHARGE from Dr Kim Blake and a workshop about CHARGE presented by me).

At the request of parents and other family members at the 2001 Conference in Indianapolis there has been a prime focus on behaviour at all these gatherings. In Cleveland this resulted in a whole day of presentations about various aspects of CHARGE behaviour (with speakers from Holland, France, Norway, the UK, Australia, and the USA) that created a growing excitement and feeling of momentum as the sessions progressed. The topic is so complex that there was a wide focus and range of viewpoints presented. This confused some people in the audience who sensed contradictions where they

were seeking clear cut answers, but really I felt that it showed how much we are only just starting to explore all these ideas and how far we need to go if we are to achieve a synthesis of them that will be truly helpful to each person with CHARGE.

The most practical outcome of the Cleveland meeting was that the American Journal of Medical Genetics agreed to publish the texts of all these presentations in a single issue devoted to CHARGE sometime in 2004. There

be a valuable resource to use in educating people about CHARGE and should also provide a spur to further research.

At the Deafblind International CHARGE Network meeting in Toronto it was sad to have to acknowledge that David Levey is no longer involved in servicing the group. He was thanked in his absence for all that he has done over the past five years towards creating and maintaining the Network. An impressive number attended the Network meeting, which was effectively chaired by Tim Hartshorne. It was agreed that I would attempt to act as secretary to the group, maintaining e-mail contact with anyone interested to try to ensure representation of CHARGE on the programmes of future DbI World and European Conferences (next up will be Slovakia in 2005, and Perth, Australia in 2007). The Network also set up a new listserv (kindly created by Lisa Weir) and anyone interested in knowing more about the Network and its listserv can contact me at dmbrown1@pacbell.net

If you are a parent what will all of this mean for you and your child with CHARGE? Probably not very much in the short term even if you were able to attend any of these meetings. There is so much that we do not know or understand about these children and young people that, in spite of all the intensity of this year’s activity, there is a real feeling that we are only just beginning to ask the right questions and to share what we are thinking. CHARGE for a very low incidence condition is achieving surprising prominence in the field of special needs and future meetings seem likely to maintain this momentum of research and sharing.

David Brown, Education Specialist, California Deaf-Blind Services

A GRANDMA'S PERSPECTIVE – Sue Barker

I always imagined life as a grandma would be an easy ride - the occasional babysitting service, the odd day on the beach, the magic of children at Christmas etc. What I had not reckoned on was the birth of my first - and to date - only grandchild Megan 8 years ago who was born with CHARGE Syndrome.

I don't want to write about the early years, everyone reading this will know about the constant worry, hospital visits, operations etc. So instead I would like to share some of the sheer joy of having Megan in our family.

Every other weekend we pick her up on Friday afternoon and she stays with us until Sunday evening, giving my daughter and her husband a well earned rest. During the summer months we spend weekends at our caravan on the East Coast. One of the few words that Megan signs is 'caravan' and that alone made blowing our retirement fund on buying one worthwhile. As we near the coast Megan appears to recognise various landmarks and her hands become extremely busy, twisting and flapping. She starts to shout and then the final 'I'm very excited' move - her feet start to twist round and round! More shouting as we enter the caravan and then while granddad and I prepare the tea Megan inspects all the rooms, just to make sure everything is still there.

Meal times are not easy. Megan is still totally tube fed, but thankfully this year she has started to enjoy chewing food. How much of this actually goes down her throat is unknown, but it must be nigh on impossible for some of it not to be swallowed although she is quite adept at spitting out even the smallest lumps. Still we live in hope that one day she will eat orally.

After tea we play with toys, often her torch that she likes, or we read stories - or rather I attempt to sign stories while Megan flicks over the pages looking for her favourite pictures. As she has usually been at school on Friday, she is often very tired on Friday night and that's when I enjoy the cuddly granddaughter bit - she can be big on cuddles when tired, so I take

display really has her shouting and laughing. It never fails to bring a lump to my throat on seeing her happy little dimpled lopsided smile.

When we return her home on Sunday night we are always exhausted and simple things like reading the papers in peace are really appreciated. Yet we receive double the pleasure from knowing we have given Megan a lovely time and Claire and Dave a well deserved break and as for us we enjoy every minute of it.

In our late 50's we never thought we would have to learn another language - BSL. Nor did we expect to be going on fairground rides and any thoughts of holidays in luxury hotels have been replaced by self catering weekends in a caravan. Yet we love it. Our lovely Meggie has enriched our lives in many ways and she certainly has the knack of putting any other problems into perspective.

We are both very proud of the way Claire and Dave cope on a daily basis with all the difficulties and problems presented by Megan. It's never going to be an easy ride and we know that many of you parents reading this will say that you're not special people - but you're wrong - your children with CHARGE have made you special - just as they are!

KIMBERLEY RUGLYS – David & Carol Ruglys

Kimberly is eight years old and required a kidney transplant in August 1999 but about 4 months ago she developed Nephrotic Syndrome in it (the kidney gets rid of too much protein making her very puffy all over the body especially her face.

We were told by her renal doctors that nothing could be done to treat her kidney save to slow down the failure of it and that she would not then be able to another as the same would happen again. However after further research and a doctor stumbling across information from other countries they have decided the kidney can be replaced. Kimberley is due to have her kidney taken out after which she will need 4-6 months of Haemo Dialysis and then be put (on call) for another kidney. We understand that the Nephrotic Syndrome was caused by Cyclosporin one of the anti rejection drugs given after a transplant. Kimberley is now suffering from diabetes as well.

Can anyone tell us if they have had a similar experience or can give any advice?

NOTE: Please contact me (Simon) if you have any advice or input. I have managed to speak to the Nephrotic Support Group for Children and I understand from the group that Kimberley is the first person in the country to suffer this reaction.

FUNDRAISING

VIRGIN VIE FUNDRAISER - Carol Thomas

I wasn’t aware of Virgin Vie and their cosmetics range until recently (I am just so out of touch these days!) when I attended a Charity Night that a friend was holding for her disabled son’s support group. There were girls from Virgin Vie doing makeovers, manicures etc and as my friend had told me not to bother wearing any makeup I went home looking considerably more attractive than when I went out (much to my husband’s delight)!

I thought I might do something similar so contacted a Virgin Vie consultant. They operate a party plan type system, but if it’s for a charity they can issue you with tickets for which you can charge a nominal sum, posters and a raffle prize. They will also do mini makeovers, manicures etc for which you can charge maybe 50p or £1. This also goes to your charity together with the commission on any sales made on the night. Since I wanted to hold a big event with quite a lot of people the girl I dealt with said that she could get two or three consultants to be there on the night.

I recruited a friend of mine who loves organising things, booked Friday 5^th December and we decided to hold a Christmas Party with a full home cooked buffet (contributed by myself and many friends), Virgin Vie products, makeovers and spa, a local beautician doing nail art, manicure etc and a friend offering Indian Head Massage. We sold tickets at £5 each, ran a bar offering drinks for 50p and £1, charged 50p for beauty treatments and had a raffle with donated prizes. Some great friends helped run the whole thing – food, raffle, bar etc and we raised a total of £457 on the night! Following on from this another girlfriend who works for Tigerprint (a division of Hallmark Cards) mentioned my Christmas fundraiser and the CFSG at work who sent a cheque for £489! I held the event at home and apart from all the tidying up we had to do beforehand, my husband Pete and I really enjoyed ourselves as well as raising a nice chunk of money for the Group!

If you fancy doing something like this but don’t know any Virgin Vie consultants, you can phone Virgin Vie on 0845 300 8022. They will take your postcode and phone number and pass it on to either the Regional Sales Manager or a consultant in your area, who will contact with details about having a party or making a booking. Feel free to contact me on 01484 646828 if you want to bounce any ideas around.

RACE NIGHT FOR CHARGE – Clare Myers

The Family Support Group would like to say a big thank you to Ossie and Betty Brodie from Northumberland, the grandparents of little Ryan Brodie for raising, who with the help of their neighbours the amazing sum of £1,168 for our group. Below is an article written by Clare Myers, Betty’s neighbour, who with her husband Chris helped to organise and run the event:

“The idea behind raising funds at a race night is that you make money quickly! Prior to the night you have to put together a programme. There are nine races for which you get sponsors the last one being an auction race. For eight of the races you have eight horses, eight jockeys and eight trainers, each of which you sell to friends and family! We mentioned holding a race night to Betty and Ossie during the month of August. Before September was out Betty had sold everything, in fact she even tried to sell ‘owners’ (for those that don’t understand if you own the horse you name it). Sponsors were coming in fast and furious too, so much so that we had to ask Betty to stop doing whatever it was she was doing and relax!!!

We arranged to have 100 tickets printed, not sure as to the response we’d get, but as the night approached it became evident that it was going to be a sell out. Pie and peas were included in the ticket price.

A team of men from the local Boys Club organised the actual screening of and betting on the races. Chris acted as host handing out prizes and of course counting the makings on the night. Ann and Elsie did a fabulous job selling raffle tickets. Clare ran about co ordinating things and keeping the night on track.

The room was full by 7.30 pm and at 8.00 the races got underway. Betting was fast and furious and the noise stupendous. A quick game of reverse bingo was held causing much hilarity then everyone settled down to enjoy steaming hot pie and peas. We held a raffle with numerous super prizes to suit all ages, all of which had been kindly donated from a watch to a teddy bear and sweets to brandy.

At 10.10 we were back to the races and frantically betting on favourite names and numbers. Then came the final race - an auction with syndicates and individuals furiously bid against one another. The tension mounted. Brenda’s horse came romping to the line, up went the lights Denise and Chris dashed to the front and counting the income began.

The grand total collected came to £1,168 that Chris forwarded to Carol Thomas chair of the CHARGE Family Support Group.

Comments about the night have included - fabulous, great fun, hilarious and tremendous.”

If anyone fancies having a go at organising a race night Betty has kindly put together and forwarded ‘a guide to understanding how to raise funds by having a race’ night to Carol Thomas - feel free to ring 01484 646828 (or email cajthomas@btinternet.com) and ask for a copy.

SOCIAL EVENTS/ACTIVITIES 2004

What sort of events do you want to see from the Group this year? For instance:

· a weekend at Centerparcs?

· an inclusive activity weekend at somewhere like the Calvert Trust, Keswick?

· a typical Family Day – activities for younger children, chance for parents to network, lunch?

· a joint weekend with Sense, with accommodation, workshops, Leisure Club etc?

· something else?

Please contact Carol Thomas or Simon Howard with your ideas as soon as possible.

FEEDBACK

Please give me any comments – positive or negative about the newsletter. I can only improve it if you give me feedback.

EMAIL ADDRESSES

A continued plea – if you have not given either Carol or I an email address when you have one please do. Newsletters sent out by post go out at least a week (last issue 3 weeks later) after they are emailed because of the amount of photocopying and stuffing of envelopes (remember this is done in my own and Flo’s time).

CONTACT DETAILS

CHARGE Family Support Group Website

http://www.widerworld.co.uk/charge

Hanna Levey (First point of contact)

Tel: 020 8552 6961

Email: Levey2000@aol.com

Carol Thomas (Chair)

Telephone: 01484 646828

Email: cajthomas@btinternet.com

Barbara Payne (Secretary)

Telephone: 0113 286 8350

Email:john.payne7@btinternet.com

Simon Howard and Flo Njeru

Telephone: 020 8265 3604 Emails:si_howard@hotmail.com or flonjeru@hotmail.com

(note if you are not using a hyperlink for my email it is si_howard@hotmail.com – the underscore cannot be seen on the link)

Any problems with my email please use Flo’s

Yvonne Arnold (Committee)

Telephone: 01708 764533

Email: eveian@btinternet.com

In Scotland Elaine Murray- Bell is available as a point of contact.

Telephone: 01387 250284.

Her email address is: Jmurraybel@aol.com

The views expressed in this newsletter are not necessarily those held by the CHARGE Family Support Group.

LONDON MARATHON SPECIAL FEATURE: Anne Maguire Treasurer of CHARGE Family Support is running to raise funds for the group

VIRGIN VIE FUNDRAISER - Carol Thomas

RACE NIGHT FOR CHARGE – Clare Myers

FEEDBACK Please give me any comments – positive or negative about the newsletter. I can only improve it if you give me feedback.

EMAIL ADDRESSES

CONTACT DETAILS

FEEDBACK

Please give me any comments – positive or negative about the newsletter. I can only improve it if you give me feedback.