Banff and Buchan MP David Duguid has hailed the efforts of campaigners who raised thousands of pounds to help children affected by a rare genetic condition.
Local volunteers recently organised an ‘Intoxicated Brew’ event at the Garret Bar in Mintlaw which raised £3,517 in aid of the Max Appeal – a charity for those diagnosed with 22q11.2 Deletion Syndrome, also known as DiGeorge Syndrome or ‘22q’ for short.
It has been established that this little known condition is the second most common genetic disorder after Down’s Syndrome, and is known to affect at least one in 1,800 births.
However, recent analysis suggests that 22q might be up to twice as common as Down’s Syndrome.
David is the chair of the All Party Parliamentary Group (APPG) on 22q11 and has tabled bill at Westminster calling for the NHS to develop a strategy for the condition - the second reading of which is currently scheduled for October 26.
The Scottish Conservative MP attended the fundraiser in Mintlaw and commented: “I have become involved in promoting the awareness and understanding of this condition across the UK and was delighted to attend this local event. It is great to hear that so much was raised for Max Appeal.
“It was wonderful to see so many people out spreading awareness of the condition and raising so much money. This can make a real difference to a lot of families who are placed in a very difficult situation.
“As chair of the 22q11.2 Deletion Syndrome APPG in Westminster, and with my Ten-Minute Rule Bill calling on the NHS to develop a strategy for improved diagnosis and treatment, it is great to see the increasing awareness of the condition.”
Peterhead mum Gemma Martin’s daughter Bella was diagnosed with the condition in November last year.
She said: “When we got Bella’s diagnosis, I did the worst thing and Googled 22q. The results were terrifying, but after speaking to specialists and geneticists we are confident that Bella should be quite mildly affected.
“Other 22q parents have welcomed me into groups and I realise this isn’t the case for everyone. Although our diagnosis is relatively new, the consensus document that Max Appeal creates has already proved invaluable in introducing the syndrome to Bella’s school and Max Appeal will be my first port of call should I need any more advice or assistance.
“We don’t know what support Bella will need in the future, but without fundraising Max Appeal wouldn’t be there to help us and the other families living with 22q, so it was a no brainier to hold an Intoxicated Brew to raise awareness and funds.
“I would like to take this opportunity to thank Linda and her staff at The Garret Bar in Mintlaw who did a fantastic job and laid on a beautiful spread and delicious cocktails.
“Also a big thank you to all the local businesses that donated prizes and to each and every individual who bought tickets for the event, lucky squares and raffles. Without this generosity the event wouldn’t have been as successful as it was.”