Browsing the archives for the cfc tag

A Fundraising thank you

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News, fund raising

We would like to thank Marie Griffin for her amazing fund-raising. Marie wrote:-

I have an 8yr old son called Kieron with CFC syndrome. In March I won £500 worth of prizes in a local competition and decided I would do my own fund-raiser for CFC and Costello UK. On the 16th July I held a party and a raffle and raised just over £2000. I hope this will help towards the funding of a CFC group which is much needed in this country

On the evening of Friday September the 10th we will be having a joint Costello Syndrome & CFC meeting. The aim of the meeting is to discuss with the families the future of support in the UK for both of these syndromes. A number of ideas have so far been proposed, one being an expansion of  the Costello support group to grow and include CFC.

Thank you Marie for your hard work, and we look forward to seeing you and all of the Costello and CFC families at our conference.



London Conference 2010

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London conference 2010

With the days flying by I would like to remind everybody who is interested in attending the London conference to submit your final registration as soon as possible.

We still have lots of work to do, including booking coached, ordering food, and and planning the family day out.  The sooner people can register, and we can finalise numbers, then we will be in a position to get the best prices, and ensure that enough food is provided for all.

For more information about the event, click the conference link above.

You can register in 2 ways,

1) Return the paper form to us in the mail ASAP

2) Register on-line    Click to register now

many thanks for your help, and we look forward to a great event

costello / cfc London conference 2010

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News

It has been a long road but the end is close. For the first time in the UK a joint conference is being held for both Costello syndrome and  CFC syndrome. This promises to be an amazing event. Planned around family’s coming together and meeting often for the first time with others. For children to meet with others who understand each other. At the same time doctors and researches will be presenting to the families and will be on hand to answer questions.

For more information of the event, to see the program or book your hotel, please click the conference link above, and we look forward to meeting with you all soon


The post office

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London conference 2010, random ramblings

The day had finally come, weeks of planning, hotel deposit paid, letter written. So on august 26th I set of to the post office, letters sorted into neat piles by country. Each pile of envelopes wrapped by a single elastic band. There were to be no mistakes the letters for our conference were finally ready for posting. So armed with nothing more then a credit card it was posting day.

We sat back, relaxing in the glow of a job well done, waiting for the postman to deliver or registration forms, work out the conference meal booking and finalise the plans for our family outing.  What I did not plan for was the postal service.

With letters stamped and on the way it should have been a formality, the mail man does his job, delivers letters, that is the duty of the postal service, since  1840 when the first stamp was introduced, the cost of a stamp a letter would be delivered anywhere in the world.

This has not been the case for what should have been a simple task for the post office,  to just deliver letters, after all they have had enough practice. This has not been the case.

Many people have not yet received the conference information, so if you are one of them please don’t worry, the information will be posted on this website for you to download at your pleasure.  As for the post office, I will stick with email in future, at least that is reliable.


London conference 2010 – update

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London conference 2010

With the start of march the panning for our conference is progressing well.  In fact we have had far more people express an interest in the event then we could have hoped for when we started to plan this event.

In the next few day I will be posting a letter to everybody who filled in the form on this website, this will include the costs of the rooms, and the conference, and meals. There is still time to express interest if you have not already done so.

The launch of the Rasopothy group at the House of Lords is now over subscribed. We only had room for 120+ people, we have far more people signed up then we have space for. So we will be allocating tickets on a first come first served.

We have a fantastic line up of presenters for the conference day, and are very excited about the event.   We will also be having breakout sessions during the day.

If you have any questions please post them as comments below. I will post more info as the plans develop.

London Costello Syndrome / CFC Syndrome conference 2010

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London conference 2010

With the success of the 2009 conference which was our 6th conference held in the USA, the International Costello Syndrome Support group in the UK is pleased to announce our first UK conference.

The event will be held in London at a venue yet to be announced.  Helaina stone with her mom and dad

The proposed timetable

September 8th 2010  afternoon / evening.
Meet at the hotel, chat and drinks.

September 9th 2010
UK conference Day.


Helaina stone with mom and dad picture 2 September 10th 2010
Families will be joining with there cousin syndromes on the  same genetic pathway at the House of Lords.

We aim to bring together CFC syndrome, Noonan Syndrome, Neurofibromatosis type 1. The aim of the event is to raise awareness of this group of developmental syndromes, collectively known as the ‘RASopathies’. The Event will also see the launch of the UK RAS-Pathway network.

September 11th 2010
The aim of the final day is to have a group family day out, enjoying the sights and sounds of London.

The event is open to any CS / CFC family who wish to attend.

Pricing and hotel information will be announced shortly.