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Latest news

Vital Input from SBH Scotland Staff and Members on new IFSBH Report

On International Day of Older Persons delighted to share the International Federation of Spina Bifida and Hydrocephalus new report on 'Ageing with Spina Bifida and Hydrocephalus'.

SBH Scotland have been involved in the production of this informative new publication which offers unique insights and present results from a large pan European study.
It considers the impact ageing with Spina Bifida and Hydrocephalus has on people across the continent and the British Isles. Vital input was offered by users and staff from SBH Scotland, who led the analysis including Kevin O'Donnell who is completing his professional Doctorate at the University of Edinburgh. Kevin, who has Spina Bifida said:
"It is clear that there are variations in the way people are being supported as they age across Europe. The analysis of data from 650 participants who completed the survey painted a fascinating picture. Aging can be a difficult experience but people can build thier resilience over time, if they are prepared for such a transition."

SBH Scotland continues to offer care and support to all those affected by spina bifida and/or hydrocephalus in Scotland. Please call us on 03455 211300 if you require information or support or email us

Got talent?

Spina Bifida Hydrocephalus Scotland (SBH Scotland) is calling on talented Scots to help save the organisation with a virtual fundraising event. To help raise vital funds, SBH Scotland will host its first virtual event ‘Sunday Night Social - Live’ on Sunday 07 June and is now looking for the people of Scotland to take part in a featured talent show.

The event will be hosted by renowned entertainer and Britain’s Got Talent finalist Edward Reid via video link and London west end star, John Mclarnon, will also be on hand to entertain on the evening.

Those aged 16 and above (or under 16s if performing with a larger group which includes over 16s) are being encouraged to send in films of themselves performing their talents, whether its singing, dancing, acrobatics, stand-up or more. Those chosen to feature in the show will have an excerpt of their audition shown at the start of the show. Then it's up to the public to vote via a text message that will donate £1 to the charity! The winning audition will receive a Prize Voucher, their audition will be shown in full at the end of the show and they will go on to win the chance of performing at one of SBH Scotland's big social events when they start again in 2021!

To send your audition to us...

  1. Auditions should be no longer than 4 minutes.
  2. Please film your audition in landscape format (ie with your phone on it's side. Normal way up if using a standard camera)
  3. Please use the highest resolution your phone or camera has.
  4. Email us your full name(s), ages and town you're from. Please make sure you have permission from everyone involved to send the content in to us.
  5. Please state your name at the start of the audition film.
  6. Please don't attach the file directly into an email as it will be too big. Instead you can either store files you want to share on a cloud storage service like Dropbox, Google Drive, or OneDrive then share the link with us via email. Alternatively use a large file sending service such as WeTransfer and make sure to email to talent@sbhscotland.org.uk. Please send all links to your downloads to our email.
  7. You agree to abide by SBH Scotland's terms and conditions

Want to get your ticket for Sunday Night Social - Live? Prices start at only £5! Buy Online NOW!

Deborah Roe, fundraising director at SBH Scotland said: “The cancellation of fundraising events across the country has had a devastating impact on the third sector. At SBH Scotland we receive little statutory support and the challenge ahead of us is incredibly difficult.

“Life in lockdown can be unsettling for everyone, especially for those who require extra support in their day-to-day lives. Our Sunday Night Social is about getting together – albeit virtually – and having a good time, whilst also helping our staff and volunteers continue to provide support to those who need it most.

“This event is the first in what we hope can be a series of monthly get-togethers. We've taken the excitement, entertainment and production values of our large scale events and taken them online for the ultimate Sunday night in. We know that there are some exceptionally talented people in Scotland who will be looking to show off their skills and this event will be the perfect forum for that. So, please join us by sending in videos of your talents, no matter how silly or funny they are!”

SBH Scotland welcome 'FABULOUS' new ambassador

Spina Bifida Hydrocephalus Scotland (SBH Scotland) has welcomed Scottish radio presenter and television personality, James Smith, as a charity ambassador.

James Smith aka Mr fabulous

Also known by his alter-ego, Mr Fabulous, James presents a number of shows on Paisley FM, Scene Radio and Camglen Radio and regularly works with STV, will be raising the profile of SBH Scotland, which works with young people and their families who have been affected by the life-long conditions of spina bifida and hydrocephalus.

James, from the West of Glasgow, has been involved with SBH Scotland for a number of years, giving support to our fundraising efforts and acting as a judge at our annual ‘Strictly Come Prancing’ event, which was inspired by the hit BBC show.

As ambassador, James’ main role will be to work with the charity to raise awareness of spina bifida and hydrocephalus, along with making people aware of the services the charity can offer, including support and social groups, financial advice and health clinics.

James will be joining SBH Scotland’s team of existing ambassadors and patrons, including Gordon Ramsay, Duncan Bannatyne, Nicola Cassells and Meggan Dawson-Farrell.

James said: “I am so excited to have joined SBH Scotland as an ambassador. I work with many charities, and I’ve been blown away by the incredible work SBH Scotland carries out to help those with spina bifida and hydrocephalus.

“I want to make sure that everyone who has been affected by these conditions knows that they are not alone; SBH Scotland has helped to create a community of people who can help and support you through whatever life throws at you, from me, other volunteers and their staff, to those attending the support groups.”

SBH Scotland are required to raise over £1 million in funding to continue to support over 3,500 children, young people and adults with our support services. With the unprecedented outbreak of Coronavirus we face further financial challenges as we work to ensure all members know they are not alone at the most isolating of times. To reach our targets we are now almost solely reliant on the generosity of the public and trust and grant making bodies after many fundraising initiatives have been postponed or cancelled.

Deborah Roe, fundraising director at SBH Scotland, said: “James has been a huge advocate for our charity for a number of years, and his appointment as charity ambassador now makes it official. It’s also an incredibly positive bit of news for us to share at such an uncertain time for so many.

“James is an incredibly compassionate person with a real desire to help others, just as we do at SBH Scotland. We’re looking forward to working with him for years to come, helping those who need our support.”

Find out more about SBH Scotland's Ambassadors or find ot how you can support us during the Covid-19 pandemic.

Keeping connected in a crisis

The team at SBH Scotland have risen to all the challenges the current virus pandemic has thrown at it and are doing all they can to keep connected with SBH Scotland members at a time when feeling socially isolated is at its height.

SBH Scotland Clinical Nurse Specialist, Sharon Levy uses video chats to keep in touch with SBH Scotland members during coronavirus lockdown

At Spina Bifida Hydrocephalus Scotland (SBH Scotland) our members and staff are our utmost priority and in a time of constant change that sentiment remains stronger than ever.

Although the Coronavirus has brought with it many restrictions and uncertainty, SBH Scotland members are not alone in coping with the challenges it may bring them.

SBH Scotland have worked to continue a vital support service albeit in slightly different formats than normal.

Until further notice the Dan Young Building, our Head Office in Cumbernauld, is closed to members and following government guidelines we have made the decision to stop home visits temporarily. We have also postponed our support and social groups in their traditional formats. However, our Family Support Team remain dedicated to supporting members and are there therefore offering a:

Helpline: 03455 211 300. Call us Monday to Friday between 9am and 5pm and we will be there to talk with you or just be a listening ear for your concerns.

Check-In Service: Regular contact through a weekly phone service to check in and make sure members are doing ok.

Support Email

Coronavirus Hub and Information: We have a dedicated page for information relating to the Coronavirus. If members have any concerns of how they could be affected they can also click on our link and have a video chat with one of our clinical team.

Online Groups and workshops: Our team are looking at a range of technology so we can continue social interactions between members online as well as launch online workshops.

YouTube: Our YouTube channel is home to many useful resources during times such as these including Have A Go films to encourage children's play and development and our support worker Kerry has also been filming 'dancercise' videos for thos with limited mobility. Visit our channel now to subscribe.

Facebook private groups: We continue to have dedicated private spina bifida and hydrocephalus groups for SBH Scotland members on Facebook.

No one knows the long term effect that the Coronavirus will have in Scotland but whatever happens the SBH Scotland team are doing all they can to stay connected to their comunity. Contact us if you need support.

Sign up to SBH Scotland for a healthy challenge this February!

Craig Houston after running the Great Scottish Half Marathon for SBH Scotland.

It's February, and people are already letting their new years resolutions of better health and fitness fall by the wayside! However a guaranteed way to continue with your health goals is to set yourself a challenge and stick to it. At SBH Scotland we're always delighted at the number of people who choose to walk, roll, stroll and run for us throughout the year and by signing up to an event it means a date is set and a plan of action can be put into place.

This February we're asking everyone to join our team and sign up to an event for SBH Scotland. We can offer support throughout your fitness journey with us and we are always on hand for any questions you may have. If you want to take part in a challenge contact our team by email or call Lynsey on 03455 211 600.

This month we'll be featuring some of those fundraising heroes who have already taken part in a sponsored fitness challenge for us so please make sure you're following us on Instagram and Facebook.

In the meantime Craig Houston-Haynes, who has taken part in the Great Scottish Run Festival for us an amazing 3 times, has emailed in his top running tips for taking part in a race.

My advice is for a half marathon

  • Definitely you need to have put in the miles and trained for it - ask yourself have you done enough?Work to one of the many training plans that are available online for your level of running experience - these are invaluable
  • Be hydrated the week leading up to the race - drink sips often and not try and drink it all on the day of the race...I've done that and you end up needing to pee every half an hour! Not comfortable or fun especially with toilets spread out every 4 miles or so!
  • Don't start too fast and get caught up with those who sprint off too fast. For the first few km/miles start slow! And tell yourself to slow down because you probably are still running too fast at this part of the race. It allows you to get into a momentum and not run out of energy half way through the race and struggle in the last few miles.
  • I took all these on board and knocked 10 minutes of my best time so it works.
  • Finally, Enjoy the day and fun round about you. It is such an achievement and the feeling you get when you finish is just brilliant - then go and enjoy that well deserved pint!

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Our latest news

Vital Input from SBH Scotland Staff and Members on new IFSBH Report
'Ageing with Spina Bifida and Hydrocephalus' report available now

Got talent?
SBH Scotland are looking for talented line-up for their dazzling new online event

SBH Scotland welcome 'FABULOUS' new ambassador
Positive news in uncertain times

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