FOR SPINA BIFIDA HYDROCEPHALUS SCOTLAND
by Tracy Mukherjee
One of the many sectors falling victim to the pandemic were charitable organisations and their ability to fundraise. Many charities are completely reliant on the public to keep them afloat and when covid hit, it was a fatal blow.
Luckily Spina Bifida Hydrocephalus Scotland (SBH Scotland) have weathered the storm and are back with a bang… or should I say a zip? More on that later. Back to the organisation…
Spina Bifida occurs due to a fault in the spinal column forming properly during pregnancy. This causes damage to the nervous system. Hydrocephalus is a neurological condition whereby cerebrospinal fluid (CSF) cannot drain properly. The build-up of CSF then puts increased pressure on the brain which can cause cognitive or physical problems.
In 1965 the charity was created by parents for parents and their children. In order to acknowledge and meet the needs of their children who had varying degrees of disability, a national organisation was formed to ‘speak with one voice’ and advocate for those needs from a perspective of personal knowledge and understanding. Even today, that sense of unity is paramount to the organisation. Clare Cogan Turner, Communications Manager at SBH Scotland says ‘We always like to think of ourselves as a family – being there for children, young people and adults through all the stages in their life, whenever they need us.’
And like so many charities, the pandemic was a frightening time. Clare explains, ‘If the past couple of years have taught us anything it’s that the future is uncertain. And there is nothing more terrifying to a charity than financial uncertainty when over 3,500 people rely on you for help. We are the only Scottish charity with a remit to specifically support the rare, complex disabilities of spina bifida and hydrocephalus. For the families and individuals who need us we are a lifeline.’
SBH Scotland offer an incredible bespoke service, uniquely catering to each member. Specialist staff who work across Scotland provide a lifetime commitment of information, support and projects to all those affected by spina bifida, hydrocephalus and allied conditions. Every year information on the website is accessed over 55,000 times and the Scotland-wide services are available to over 4,000 children, young people and adults. The services include a helpline, workshops, individual and family support, home and hospital visits, youth clubs, health check clinics, one to one key workers and respite.
The organisation’s vision is clear, ‘Spina Bifida Hydrocephalus Scotland seeks to increase public awareness and understanding of individuals with spina bifida and/or hydrocephalus and allied conditions. It aims to support all those affected to identify their needs and to empower them to make informed choices and decisions.’
Receiving little statutory funding, fundraising is vital to the organisation.
It costs over £1 million every year to provide extensive specialist services, the financial support coming almost solely from people getting involved, alongside the generosity of trusts and the goodwill of volunteers. Social events, grant making bodies and sponsorship, all go towards raising the money required each year.
Relying on sponsored challenges does however have its benefits… zipslide days! Having been put on hold for the past few years due to Covid, the SBH Scotland Zipslide the Clyde appears to be one of the first back on the Clyde. In the three years prior to Covid, 500 people had completed the zipslide with the charity. This year the hope is for 250 supporters to participate at the event in September, aiming to raise £40,000 for SBH Scotland.
Clare says ‘This year we’re launching off aside Glasgow’s Riverside Museum which has never been done before! We are looking for people who not only love adventure but those people who also realise they’ll be making a positive difference in the lives of our families. This is a fantastic opportunity for those who’ve wanted to take part in this amazing event over the past couple of years – It’s finally back!’
And the monies raised? What can we see it going towards? ‘We provide support in a number of ways including 1-2-1 support in homes, hospital and at schools, healthcare transition support, health check clinics, finance and benefits advice, social and support groups for all ages across Scotland,’ says Clare. ‘The latter is always classed as one of the most important things we do as the groups create a network of support for families which allow them to create friendships and importantly feel like they’re never alone.’
A day out on the Clyde, racing towards Govan with the Waverly, OVO Hydro and Science Centre in view. Oh, and raising money for a simply outstanding charity to boot. So why not get your friends or work colleagues together and make a day of it all in aid of SBH Scotland?
To find out more about SBH Scotland and how to sign up now for the zip slide challenge in September visit: sbhscotland.org.uk/zipslide