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.
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
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
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.
