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Neurofibromatosis awareness day (May 17th)


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Hello the OTIB faithful, 

There is an up and coming charity event called Neurofibromatosis awareness day on the 17th of May. In fact the Neurofibromatosis foundation, have designated the whole month of may, to raise awareness of this genetic condition, which effects 1 in 3,000 people world wide.

Please take the time watch this video which outlines some of the symptoms associated with this affliction.



Although this video tutorial is the american equivalent to the British foundation  

It does give you a little insight into what Neurofibromatosis (NF) is. More information can be found at  http://www.nfauk.org/


My eight year old son has this condition, (NF Type 1) and we would really like to raise the profile of this disorder. And thought that maybe the football club, and the good people on OTIB could help raise the level of awareness. The Neurofibromatosis foundation awareness day (May 17th) involves asking local councils, and organisations to light up landmarks around your local town or city in the NF colours of  blue and green. 

We thought a blue light emitting from Ashton Gate would be particularly poignant,and spark interest within the public and media alike.

We are  contacting the Bristol City council also, to see if landmarks such as Cabot tower, Clifton suspension bridge, Bristol Zoo etc can be lit up. 

We would welcome your comments and support and any input you may have to raise more awareness.



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I know it may seem like "sacrilege". A blue light shining from Ashton Gate stadium.  But something like this a great springboard to get people and the media, (social media) talking about it,and In doing so rasing the awareness as much as possible for the condition and charity alike. 

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On 11 May 2016 at 10:31, phantom said:

Hi @Redrobbin with this event less than a week away now - how are things progressing?

Hello phantom thank-you for your post. 

We are attending an NF fun day in London on Saturday and am going to write short piece on here after that event. 

With regard to our personal experience of raising awareness with regard to the lighting of the stadium. David Lloyd has contacted us, to inform us, that because of the stadium development; understandably they are unable to participate this year. But should be able to assist in the future. 

A similar situation with regard to our approaching of the personal in charge of Clifton suspension bridge.  

They have work in progress and scaffolding erected during the month of May, so again are unable to accommodate our request at this present time. 

As said, I will post again after the weekend to inform, and draw a close the this thread. 

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Yeah a good day had by all. Jamie enjoyed the day. And we were right next to Waterloo station. So the Houses of Parliament, Big Ben, the London eye were a stones throw away. 

The actual event was mainly built around a comedy for kids concept. 

There were four comedians who all did a set. After the main event they had a comedy workshop where they took the kids and gave them tuition on how to perform and tell original ( their own) jokes. 

Giving them examples and ideas to express their selves through comedy.

It was really enjoyable and good to meet other kids and parents that  live with the condition. 

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I would just like to thank all the people who have viewed, liked, commented, and personally messaged me with regard to this thread. In raising awareness for NF and the neuro foundation. 

With over 1,300 views I thank you all; and do hope you have clicked on the links and gained a little insight into the condition and charities involved. 

Awareness day will be happening again next year with more landmarks being lit in the NF colours. Fingers crossed that Ashton gate will be one of them. 

A special mention also to the forum moderators who have kindly pinned and policed  this thread for me. 

Special thanks to phantom who has helped me out every step of the way. 

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