TEDBURN St Mary Village Hall will be the venue for a Family Fundraiser, tomorrow, Saturday, September 23, from 7pm until late.

The evening will consist of local band BIAS, a raffle, silent auction, main auction, buffet, face painting, bar and photo booth.

The evening will also see the launch of a “Devonshire Dads” calendar.

Event organiser Eve Martin, explained: “The calendar features 12 brave dads who took their kit off and posed using props for modesty.”

Eve explained that the family fundraiser is being held to raise funds for the Noonan Syndrome Association.

She said her youngest daughter is personally affected by Noonan Syndrome.

Noonan Syndrome is one of a group of related genetic conditions known as the Rasopathies which are increasingly being looked at together for research purposes because of the way growth is targeted by the gene. 

The Noonan Syndrome Association (NSA) encompasses many of these related conditions but Noonan Syndrome is the main focus as the widest spread of these complex genetic disorders, present in one in 2,500 live births in the UK. Despite this and its major impact on lives, it remains a comparatively little known condition.

Noonan Syndrome can vary greatly in breadth and severity. It is common for those affected by Noonan Syndrome to have an array of physical and health problems, some of the more common including:

• Heart abnormalities in 80 per cent of people affected 

• Feeding problems from birth into childhood

• A distinctive Noonan “look” including heavy eyelids, tightened skin around the neck, and ears set low on the head.

• Speech and hearing—often undeveloped hearing can have an impact on speech

• Development, behaviour and intelligence – children with Noonan Syndrome often suffer from delayed intellectual development and behavioural problems.

• Growth is often impacted with many children and adults having short stature

• Epilepsy is evident with a significant number of Noonan’s children and adults

• Lymphoedema and other lymphatic system disorders

Being still comparatively little known, even amongst some of the medical profession, families affected by Noonan Syndrome have to face many challenges of parenting and caring without appropriate support and are often left feeling very isolated.

All are invited to attend the Family Fundraiser and tickets are priced at £10 for adults, £5 for children or £25 for a family ticket.

Book by contacting Eve on 07970 881969.

Alan Quick