Speaker - Kenny Innes, Butterfly Trust

President John Spittal opened proceedings with the news that the Club council were proposing to donate £500 to the Madras College Pipe Band which had been a major attraction at the Charter Dinner event last year.

The funds are sorely needed to refurbish or replace instruments which require TLC. The members unanimously agreed to the donation and look forward to hearing the pipe band regularly.

Guest speaker for the evening was Kenny Innes, who had braved the wintry elements journeying from Falkirk to address the Club. Kenny is manager in charge of children and family services and resources for The Butterfly Trust, which supports sufferers of cystic fibrosis.

The Trust was set up in 2002 and from its base in Edinburgh is the sole organisation in Scotland which can aid the 1100 sufferers and their families..

Kenny told the audience that, on a daily basis, the Trust’s staff and more than 100 volunteer helpers deal with at least 850 clients throughout the country.

Cystic fibrosis is caused by a faulty gene which is genetic and cannot be cured.

Its effects have varying degrees of severity on the lungs, digestive system and other organs of the body and is such a life-limiting inherited condition that the average lifespan of a sufferer is no more than 30+ years.

Patients require an enormously complex and time-consuming treatment regime each day. This includes intravenous medication, nebulisers, massages and frequent trips to medical establishments.

As a result there is huge burden of care on families, particularly on parents of young patients.

There is always an impact on other family members, inability to even have enough time for employment, persistent high travel costs and therefore a financial implication.

The Butterfly Trust, which is partly funded by Government and mostly by donation, offers practical help for all these issues in addition to the medical care. It can advise families on a wide range of grant funding, benefits, respite care, supply of goods for the home if a sufferer wishes to set up home independently, and can organise volunteer transport for visits to hospital and so on.

In proposing a vote of thanks for an informative address, Mike Dow echoed the feelings of all present that the condition of cystic fibrosis was not widely understood and that The Butterfly Trust’s work was clearly intensive and hugely necessary.