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We had our fundraising night on Friday and it was splendid fun, Jonathan wore his kilt and just had the best time listening to the fantastic music.

A big thankyou to: 

the Wan Lam chinese takeaway,

Unisex hairdressers,

The Thistle Tavern,

Luigi's restaurant,

and two anonymous local businesses for donating prizes for the raffle, as well as folks contributing cd's and other items on the night.

Thank you to Perfect Smile, Perth for your wonderful personal donation.

THANKYOU! to

Charlie Chung and 13Hundred,

Dunfermline Folk Club - Gifford, Davie, Roy and Lindsay,

the Catskinners,

Trish Caird,

Jim King

and most worthy substitute Mark Rafferty.

A wonderful night and the proceeds will be much appreciated by the LSA.

 

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Thank you for visiting my fundraising page for the Lowe Syndrome Association, (LSA) which is celebrating its 25th anniversary in 2008.

Donating through this website is simple, fast and totally secure. It is also the most efficient way to support fundraising efforts for the LSA. You donate in US dollars, and it is converted to UK pounds on your credit card statement. The exchange rate on the 5th September 2008 is £1 = $1.75. So, for instance, if you donate $10 it will cost you roughly £5.60, $20 = £11.35 - you get the idea!

Please double check the exchange rate to make sure you are happy with how much you are donating. If you have any questions, please email me on amethystwave@aol.com

Many, if not all of you reading this will know Jonathan and Team Fisher directly and have supported us in one of many different ways for over the past 14 years he's been with us, or, more likely, the 10 years we've lived in deepest, darkest Fife. ; ) 

It is, in effect a "pure cheek" to ask you to help more, you can tell fundraising is not one of my strengths. 

But I will ask you to help.

Because I am in no doubt that Jonathan would not be alive today if it were not for the advice, information and support of the Lowe Syndrome Association..................... the alternative is unthinkable.

So how did we get here?

Some friends of mine who are talented folk musicians and songwriters over in Glasgow, offered to play a benefit gig for Lowe Syndrome in Dunfermline. Two of them, Steven Clark and Jim King were playing a gig at the Thistle Tavern and got chatting with the host/chair of the Dunfermline Folk Club and a fine musician in his own right; one Gifford Lind, to ask about locations etc. Gifford, in turn, enlisted the help of the most fabulous Charlie Chung, a veteran of doing benefit gigs with his group 13Hundred. Charlie is a senior member of the OT staff at the Victoria Hospital, Kirkcaldy, and has been pivotal to getting this far.

It has totally overwhelmed me that a group of friends and some relative strangers would come together with their time, talent and money to set up this event in our local community to show support for one wee boy and his family with some rare condition. Very humbling too.

I realise not everyone can attend the concert, for various reasons, so I set up this page so you can show your support in a different, but no less important way.

Your money will not be used for wages, or advertising or administration, but will directly support boys and men with Lowe's and their family carers all over the world.

Cheers for reading this and many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!

Fiona, Alan,

Marianne, Jonathan and Katie.

XXxxx

Post-script: some key facts about Jonathan and Lowe Syndrome.

Lowe Syndrome (LS) is a rare, complex, life-limiting and life-threatening genetic  spectrum disorder which affects males only. It is also called oculo-cerebro-renal (OCRL) syndrome to explain the major problems with the eyes ( bilateral cataracts, glaucoma and keloids ) brain ( learning disabilities, developmental delay, autistic spectrum disorder and epilepsy ) and kidneys ( nephrocalcinosis, fanconi syndrome and renal failure ) It is often passed from a carrier mother to an affected son in the same manner as haemophilia.

It affects about 250 boys and men worldwide, with around 20 males in the UK and Jonathan is one of only three boys known with LS in Scotland. Boys with LS are cheerful chappies as those who know Jonathan will attest.  : D

Sadly however, boys with Lowe Syndrome typically die in their teens and twenties, though with earlier diagnosis and beginning medication more quickly, a few men have survived into their 30's and 40's. Jonathan is 14 and has the developmental age of a toddler; he is registered blind, autistic, epileptic and uses a wheelchair part-time. He takes 12 doses of medicine every day, is doubly incontinent and non-verbal. He attends Calaiswood School, an additional support school located in the Duloch Campus, formerly Robert Henryson special school. He enjoys school very much indeed, and we deeply appreciate the individual education it provides. They have brought him on so much, it is a debt we could never repay.