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.



The power of the internet

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News

The great power of the internet is the ability to get information and share ideas without barriers. This can be a good thing as our support network demonstrates. Costello syndrome is rare, and our membership is spread around the world. Without the web, our group simply would not exist.

Sometimes somebody in a far of land can make  insensitive and insulting comments, and offend not only the local community, but communities around the world. On Sunday July 11th ago one such indecent happened in Australia.

Channel seven Australia has a show called weekend sunrise. Being in England I have never watched it, and was alerted about the indecent by one of our Australian members. During a regular segment about a school teacher who was suing the government over her damaged larynx, after constant yelling in order to control a composite class of Year 6 and 7. The regular guest Prue MacSween made some disturbing and insulting comments about children with special needs. I watched the segment on You-tube, (because channel 7 had pulled the segment from their website) to see what all the fuss was about,  and was surprised that at no time during the discussion was any mention as to why the teacher was yelling in the first place, and is yelling appropriate behaviour for a teacher in the first place.

As the discussion progressed the following statement was made by  Prue MacSween

Children with special needs should not be allowed to be in mainstream, classes with “normal” kids, • they hold them back (children without special needs) • Children with special needs should be “put somewhere and trained” and “properly administered to” • And that all boys are “retarded”

WHAT! did I hear that right. I watched the segment to the end, hardly able to comprehend that not only had a regular on the show just made one of the most insulting narrow minded statement on TV. The shows other presenters made no effort to apologise.

The TV company who make the show have said “Live television is always unpredictable. But clearly, Pru offended many parents with her remark”.

Sounds like an excuse, don’t the presenters and guests have a code of conduct, and if the TV company have taken the time to make the above statement, why have they not apologised to all the parents that have been offended.

On the other hand MacSween did apologise sort of.  She made an apology on her twitter feed, she tweeted the following message:-

“I apologise to those people who were offended by my remarks on Weekend Sunrise, however, you have misunderstood what was said.

What a great way to apologise,  use twitter, then take the apology back by blaming the viewers for misunderstanding her words. Right, that must be the reason why you can not take the time to formally apologise on air, your apology may be misunderstand .

Over a week has passed, since the show was broadcast, in that time a large and growing protest group has been set up on Facebook site  called “Prue MacSween and Channel 7 Should Apologise” with over 2,300 members. The TV station has not apologised for the upset and offence, MacSween has not apologised. I wonder why this would be so hard to do. And sadly the only concusion I can draw is that there is a possibility that the station stands by the comments and is Institutionally discriminatory.

I would like to remind Channel seven and the production company this is the 21st century. Not the 18th, and perhaps if your researchers  had spent a little time researching the original story, then maybe such bigoted and offensive views would not have been aired.

To help with future research about teaching,  you may like to take a look at the following website BFI , and maybe the teacher in question should find a new profession if teaching results in her yelling in class.

Update 20/07 /2010 9.40 am

After the show aired and viewers complained to the station, the video feed from the show was pulled from the web. Have Channel 7 never heard of the Streisand effect? The video has now been re-instated and can be viewed on-line by visiting the following link : Sunrise Allstars The offending piece begins about 4.44 mins in, after the discussion about the teacher.

Still no apology made however.

Todays Jeremy Kyle Show

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News

I would like to thank everybody who watched the Jeremy Kyle show this morning (15/July/2010) and contacted me with such kindness and support.  Cath and I are touched that so many people took the time to contact us through the contact form on our website, or leave us a messages in our Guestbook.

Each day that passes Helaina is an inspiration to us, her smile lights up our days, and each day that passes is precious, to be savoured and enjoyed.

I don’t know what new challenge tomorrow will bring, if some new medical complication will occur. But what we do know the past 16 years has been a roller coaster ride.

Our aim is to help and support as many families as we can, and we can only do that with the support of the public making a donation to our charity, or helping us to spread the word about our work and Costello syndrome.

So if you have a blog, a website or are on Facebook or Twitter, please help by adding a link to us, or tweeting about our site.

Part 1

Part 2

Work experiance – At the children’s center

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News

I previously wrote about Helaina’s work experience Shortly after doing a few days in the local library she did a second session of 
work experience in a local children’s centre. This time it was much more of a challenge, that said she had a good time, worked hard, and got a lot out of it.

The short video below was produced from the Power-point presentation that was made to document what she did and achieved.
We thank all of the staff and parents who attend the sure start centre for all their support.


A new shopping oppertunity

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fund raising

For many years we have had a shop hosted at Cafepress, http://shop.cafepress.com/costellokids The aim of the shop was to raise awareness of Costello syndrome, and we hoped to raise some funds for our charity. At the time we opened the store the prices were high but in line with the high street for the type of self branded product Cafepress offered.

We made a tiny commission, but over the years the prices have risen ever higher to a point where even our most loyal supporters would be put off  purchasing any of our goods.  For me having a small shop and our own range of branded goods can help us  in many ways.  Firstly making a small profit to help fund the charity, but most importantly spreading the word about the syndrome.

When talking to anybody for the first time about CS, the most common reaction is a blank look followed by the two words I have heard more then any other over the years is “what’s that” . Not just from  members of the public, but Doctors, nurses and other heath health professionals.  The simple fact is that Costello Syndrome is rare, with a tiny world population estimated to be around 350- 400, why should people know.

I have always had a plan, educate the world about Costello syndrome,  even if I have to do it one person at a time, or one web visitor at a time. Raising awareness is the key to a better understanding of CS, and at the same time people will become aware of rare disorders in general.

Which brings me back to the shop, I needed a solution, Cafepress was too expensive,  I decided to  go into the retail business myself.

So thanks to my good friend Paul W, I bought some badges for my first stock item, and found a solution to the shopping cart in a cool application called ECWID, and a new shop was born. I will be adding more items from apparel to cuddly toys over the next couple of months. But the badges had to be the first item I sold because they are special magic badges. No its true, they are magic,  they have the power to change peoples attitudes and behaviour. While wearing a badge strangers stop having a strange look and  when chatting don’t say “what’s that”, they admire the simple artwork … Designed by Lisa S,  then go off an look at the website.

By wearing a badge people can show they support a great cause, and help me to teach the world about CS.

So please visit our shop and show your support.

Announcing the first Costello syndrome golf day

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News, fun, fund raising

We are pleased to announce  the first golfing event to be held in aid of  The international Costello Syndrome Support Group (ICSSG)  The golf day will take place at  Churston Golf Club. We have interest of several local companies in the Torbay area and a number of companies have offered to give us Golf bag for the player who registers the lowest score, another prise is tickets for two people on Euro Star to France.

Thursday 26th August 2010
The first Tee off will be at 11:00am,  Teams will tee off at 10 minute intervals

Join us for a bacon sandwich tea or coffee before you tee off. Play to win the Costello Cup. We will be inviting the  winning team to return free in 2011 to defend the cup, Prize’s available on the course On return to the club house there will be a welcoming buffet followed by the Presentation of the coveted Costello Cup and other prizes.

All this  for just  £200.00 per team

If you would like to enter a team, or require more info please contact us using the form below.



Golf Day information Request
  1. (required)
  2. (valid email required)
 

cforms contact form by delicious:days

Posted by Admin on behalf of Paul Wilby Event Manager