My nephew Callum suffers from a very rare condition called Nicolaides Baraitser syndrome that currently affects a few hundred children the world over. The spectrum of the condition can vary wildly from the mildest being moderate learning difficulties and physical features through to severe being strong physical disabilities and extreme personality traits.

Each year, families from the UK and overseas if they can afford it, meet with doctors and specialists to hold a small conference where they learn new information about the condition and share their knowledge.

This is also a chance for the children to meet others with the condition and to realise they are not the only ones. For the parents and families it's an invaluable opportunity to spend time together and share their individual experiences. Parents can feel comfortable with one and another whilst brothers and sisters can meet others who know how hard it can be to help their siblings.

For these families the financial demands to attend this annual meeting are quite often too much and not every family can attend. The meeting means a huge deal to them and very often is the only time in the year where they meet one another.

I wish to raise the funds so that as many families as possible can attend the meeting in Manchester next year. The money will pay for the venue hire, accommodation costs and hopefully toward an outing for them too. If we raise more then we can also look to bring extra doctors too which would be a massive plus.

I will also be running the Manchester half marathon this October to support this page and raise awareness. I am having to set the page up as a personal cause as the condition currently does not have its own charity and is supported only through jeans for genes presently.

https://en.m.wikipedia.org/wiki/Nicolaides–Baraitser_syndrome

https://m.facebook.com/groups/112351342117049?ref=group_header

http://www.ncbrs.com

http://www.ncbrs.com/our-stories/callum

Thank you