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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

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.


Conference 2010 – why it is important

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London conference 2010, News, feelings

All the photos in this sideshow are by Rick Guidotti. Visit his website  positive exposure to see more of his amazing work.

Since 1999 we have held a family conference every two years in the USA. Having a family member with a rare disorder is very difficult to deal with. Families are isolated and alone. For the effected individuals, they do not have an opportunity to mix with with other who are like they are. Our conference has provided an opportunity for friendships to be built, both among the individuals themselves, and there families.

Something magical happens at conference. Unfortunately due to finances or health issues many families in the UK and Europe miss out on this opportunity to one together. so for the first time in September we will be starting a new tradition with our first ever UK conference. A time for old acquaintances to be re-united, and a chance for new families to meet others for the first time in there life.  A chance to share in the sadness and joys that are Costello Syndrome and CFC syndrome.

We have a lot planned, and if you have come to this page to find out more about the event, I will be posting more over the next few days. And who knows with luck we will have another great slide show to share from this unique event.

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.