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.
On June the 17th Pete Takemoto, a young adult with Costello syndrome, presented this video at the Arlington Career Center and to the Arlington School Board. His project was to do a video about bullying. His thoughts stem from an experience of someone trying to shove him into a locker in 6th grade, and his friend Colin coming to his rescue. He has also worked with the Arc of Northern Virginia to introduce state legislation about bullying.
Peggy Fox from ABC Channel 9 News has seen this and wants to do another story on Pete. She had done one several years ago when Pete lobbied to get a crosswalk (zebra crossing) so that he could get to the school bus safely. They are also considering doing some shorter PSAs that can run on cable. In addition, Pete will be presenting it to all the counselling staff in Arlington, when they convene for anti-bullying training in the Fall.
Item posted by admin on behalf of Cherie Takemoto
“Who questions much, shall learn much, and retain much.“ – Francis Bacon (born Jan. 22, 1561, London, Eng. — died April 9, 1626, London) British statesman and philosopher, father of modern scientific method.
With the words of Francis Bacon in mind I would like to announce the launch of our new FAQ. If you have a question about Costello syndrome, you will find the answer to your question and many more at
http://faq.costellokids.com
The Medical information was authored by:
International Costello Syndrome Professional Advisory Board
It was reviewed by
Dr. Angela Lin, Dr. Bronwyn Kerr and Lisa Schoyer,
I would like to thank everybody for for hard work and dedication in producing this fantastic resource.
Last week another milestone has been reached, despite the nay sayers and the barriers that society placed in the way, the mile stone was reached, passed, and triumphed over. That mile stone was work experience.
In a few days Helaina will reach her 16th birthday, and with that birthday comes a number of decisions, to do some more education, to go to work with an aim of gaining independence, or living on a the state, to be part of a society that often sees a person who is medical fragile and who has serious disability as an individual not good enough to take part in employment, and through employment gain social and financial independence.
Helaina has always been sure what she wants to do on leaving school, either work in a library, although a none reader she loves books, or to work with babies and young children in a day nursery (kindergarten). Over the past 2 weeks Helaina has had great pleasure doing some work in the local public library, she has learned a great deal, and had her first opportunity to experience the world of work.
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
Just 50 yards from finishing
Every year in April, 35,000 runners crowd the streets of Paris in the annual Marathon de Paris – or Paris International Marathon. This year one runner ran the event to raise funds for the International Costello Syndrome Support group. This is his report…..
I’m very pleased to report that I completed the 42.2 km or 26.2 miles of the Paris Marathon in an incident free 4 hours 5 minutes and 3 seconds which I have to admit I’m pretty pleased with. As a first-timer my only goals were
a) to keep running all the way
b) to get round in under five hours
so I’m chuffed to report success on both fronts. Paris provided a stunning backdrop on a classic spring day so the only injury to report is a touch of sunburn. This is something of a miracle given the curious decision of the French race authorities to serve banana at regular intervals along the course – discarded banana skins must have accounted for a fair proportion of the non-finishers and certainly meant concentration couldn’t slip…
Most importantly I want to say a huge thank you to all those who so generously donated to CostelloKids. I don’t yet have a grand total to report but we were up to £4300 as of today via web-based donations. With a smattering of cheques, cash and any late donations still to be added it should mean the £4,500 mark is comfortably exceeded.
Donate
I know that Colin Stone, the organiser of CostelloKids, is absolutely delighted with the outcome so it has hopefully made a real difference to their ability to support parents of children born with Costello Syndrome and related genetic conditions. For those who would still like to donate, the message is IT’S NOT TOO LATE! Please use the Donation button to the left and help to add to the funds already raised.
Many, many thanks again for your generous support – it certainly kept me going in the darker moments of the race when “une grande biere” in a Parisian cafe was beginning to look a much better option…
I can’t thank David enough, the funds raised will be a big help to our families and our organisation.
