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SBH Scotland get invited to Dreamnight at the Zoo!

SBH Scotland family at Blair Drummond

Blair Drummond Safari Park quietly opened its gates after hours on Friday 1st June for an exclusive event, and Spinal Bifida Hydrocephalus Scotland (SBH Scotland) was delighted to be involved.

‘Dreamnight at the Zoo’ is a special event that is held globally and hosted by over 300 zoos, safari parks and aquariums across 35 countries.

Dreamnight allows children and families who are living with life-long illnesses or disabilities to enjoy a memorable evening together. Blair Drummond Safari Park hosted its first Dreamnight in 2009.

This year the special evening took place between 6:00pm and 9:00pm on Friday 1st June and 1000 tickets were given to invited children and their families for a VIP experience with entertainment, refreshments and an early evening tour of the Safari Park. The families attended free of charge and their invites were allocated through charity partners. We were delighted to be given 75 briefs to pass to SBH Scotland families.

It was a very successful evening which allowed our families to have an enjoyable and unique experience with each other in a relaxing environment with other families. SBH Scotland was delighted to have been able to be a part of the event and grateful to have been invited.

Gary Gilmour Park Manager at Blair Drummond Safari Park comments: “Many of the families invited through our charity partners face challenges on a daily basis, and we’re very happy that we are able to host them for this memorable evening. Our event took place with the help of Safari Park staff, volunteers, suppliers, and supporters such as the Scottish Fire and Rescue Service and Police Scotland - we’re grateful for their commitment to make it happen.

Event organiser and Head of Education at Blair Drummond Safari Park Katie Macfarlane said: “I’m delighted to have helped create this memorable experience for our guests- it was a very special event to organise and be part of. The families who attended all seemed to have a fantastic night. Thanks to all those who attended and volunteered on the night – we couldn’t do it without them.”

If you are affected by Spina Bifida or Hydrocephalus and would like more information on what we do, please contact us.

Bearded heroes brave Ben Nevis ascent for SBH Scotland

Bearded Villains Team pose with charity banner

Climbing any mountain can have its hairy moments, but members of the Scottish chapter of the Bearded Villains have returned triumphant from tackling Ben Nevis in aid of Spina Bifida Hydrocephalus Scotland (SBH Scotland).

The group of 13 walkers, raised more than £4,000 by scaling Scotland’s highest peak and the only close shaves they encountered were midgie bites and blisters!

Leading the charge was Kris Day (35), from Cardonald, who was inspired to organise the climb, as his daughter Rose (8) has spina bifida and hydrocephalus.

He said; “We have a very big family network who help out a lot with her care, but we know the charity is always there for us if we need it.

“Having a child with a disability can be tough, and I know not everyone is as lucky as Rose. The charity gives amazing support to other families so we wanted to raise as much for them as we could.”

Kris has been a member of the Scottish chapter of the Bearded Villains – a brotherhood of bearded men dedicated to the betterment of mankind throughout charity and kindness - for almost a year, after managing to grow his beard past the required four centimetre mark.

He continued; “The Bearded Villains is a fraternity of bearded men from all over the world dedicated to the four pillars of loyalty, respect, charity and family.

“When deciding on fundraising pursuits, it’s usually for a cause which one of our members has a personal connection to, so I am delighted that we were able to do something for SBH Scotland. Standing at the summit, knowing the charity was benefiting from our efforts was an incredible feeling.

“We’re also committed to doing things for our local communities – like clearing paths in bad weather for people who can’t do it for themselves – we all have an obligation to look after each other.”

Deborah Roe, fundraising director at SBH Scotland said; “The team climbed upwards of 1,345m to reach the summit, and we could not be more grateful for their efforts.

“Without the dedication of our supporters, we wouldn’t be able to deliver vital services to those affected by the lifelong and complex conditions of spina bifida and hydrocephalus.

“The Bearded Villains, are heroes in our eyes."

To donate to the Bearded Villains’ Ben Nevis climb, please visit www.justgiving.com/fundraising/bearded-villains-scotland

GDPR is finally here!

Unless you've been lucky enough to have been away for the past couple of months in some exotic location, the chances are you have not only heard about GDPR but are, by now, very tired of hearing about it!

Today, it's finally here - Friday 25th May 2018!

The new General Data Protection Regulation ("GDPR") replaces the previous Data Protection Act. We at SBH Scotland take our responsibilities under all data regulations very seriously and we ensure the personal information we obtain is held, used, transferred and otherwise processed in accordance with the new regulations and all other applicable data protection laws and regulations including, but not limited to, the Privacy and Electronic Communication Regulations (PECR).

For more details about how we process your data and keep it safe please read our updated Privacy Policy.

Global's Make Some Noise campaign donates £80,000 to SBH Scotland

SBH Scotland are delighted to announce that Global's Make Some Noise Campaign have generously donated £80,000 to our Be All You Can Be Project. We are truly overwhelmed and can't thank everyone who took part in the campaign enough for their amazing support.

The Be All You Can Be project was set up by SBH Scotland to promote independence in children, providing more intensive support through sensory play and finding innovative ways to make learning fun and accessible for each individual child affected by the conditions. Des Clarke, Amy Irons and Steven Wills from the Capital Scotland breakfast show all made a visit to one of the Be All You Can Be after school groups recently to share the great news.

Deborah Roe, Director of Fundraising for SBH Scotland said,

"Wow, we simply can’t thank Global’s Make Some Noise campaign enough! For over fifty years, Spina Bifida Hydrocephalus Scotland (SBH Scotland) have offered a lifetime commitment of support to all those affected by the lifelong, complex disabilities of spina bifida and/or hydrocephalus and we are almost solely self-funded. To provide our extensive levels of support and information each year we need to raise £1 million so every penny really does makes a difference. We are incredibly grateful to the Global Make Some Noise Campaign and all those who have taken the time to support it. This generous grant which will play a critical part in our early years work with children aged 0-11 across Scotland for the next two years through our Be All You Can Be project .

The grant will allow us to provide dedicated Early Years Support Workers who offer weekly one-to-one home, nursery, school and hospital support sessions as well as regular Be All You Can Be play groups and family support groups.

Thank you.”

New stats reveal 91% of UK women have insufficient folate levels to support a reduction in neural tube defects

A study carried out on behalf of Public Health England and the Food Standards Agency which has been published today (16 March 2018), has revealed as many as 91% of women of childbearing age (16 – 49) in the UK are at increased risk of a neural tube defect (NTD) affected pregnancy due to a folic acid deficiency.

image of flour and wheatFolic acid has been found to be essential in the reduction of NTDs such as spina bifida in unborn babies. The report, which assessed the diet, nutrient intake and nutritional status of the general population, supports this by stating that increased folic acid intake through supplementation has been shown to reduce the risk of pregnancies affected by NTDs, if taken before birth.

Spina Bifida Hydrocephalus Scotland (SBH Scotland) has long advocated for the fortification of flour with folic acid to help reduce the number of NTDs. The charity welcomes the findings and calls on the UK Government to take steps to introduce legislation which makes fortification of flour with folic acid mandatory.

Chief Executive of Spina Bifida Hydrocephalus Scotland Andy Wynd MBE said; “With this report finding there’s a further increase (91%) in the number of women in the UK not receiving the adequate levels of folic acid, it again supports our ongoing calls for the mandatory fortification of flour.

“Foods such as lentils and dark green vegetables produce naturally high levels of folate, and it is already added to some foods, including breakfast cereals. However, it is through the fortification of flour where the real benefits are seen, with other countries recording up to 70% reduction in NTD pregnancies following the mandatory fortification process.

“We believe flour fortification would produce similar results in the UK and with overwhelming evidence to support it, we, once again, ask the UK Government to make fortification of flour a reality.”

Scotland specific issues

Scotland has more live births per head of population with spina bifida than anywhere else in the UK. Possibly due to religious and cultural differences, only 45% of pregnancies are terminated in Scotland as compared with around 80% in the rest of the UK.

Taking daily folic acid supplements, at the correct recommended dose* (0.4mg) three months prior to conception, could reduce up to 70% of these pregnancies from being affected and lower both the number of those born with the condition and the number of pregnancies terminated.

Children born with spina bifida often have paralysis in the lower limbs, urological, neurological and orthopedic problems which often become more significant throughout life. Fortification of flour would reduce the number of babies born with this lifelong disability. Find out more about folic acid and flour fortification on the Spina Bifida Hydrocephalus Scotland website www.sbhscotland.org.uk/folic-acid

*Some females have an increased risk of a pregnancy being affected by an NTD and should be taking a higher dosage of folic Acid

Find out more about our flour fortification campaign

Summary of results from National Diet and Nutrition Survey Rolling Programme.

Those affected by any of the issues associated with spina bifida or hydrocephalus, can call the SBH Scotland Family Support Service helpline on 03455 211 300 or email them.

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