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Unlock your right to health on World Spina Bifida and Hydrocephalus Day '21

World Spina Bifida Hydrocephalus Day 2021 Logo. Hands coming out of globe.

October 25th is World Spina Bifida and Hydrocephalus Day. This day was established and designated by the International Federation of Spina Bifida and Hydrocephalus (IFSBH) General Meeting in Guatemala in 2011 with the aim of raising awareness and understanding about Spina Bifida and Hydrocephalus (SBH). It also serves as a means to advocate and promote the rights of persons with these conditions. The WSBHD was held for the first time on 25 October 2012 at the European Parliament in Strasbourg. Find out more

Unlocking your right to health

This year the IFSBH are focusing on everyone's right to health. Health is an enabler of inclusion. Article 25 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) states that “persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability”.

The right to health in accordance with article 25 of the UNCRPD is a high priority for IF and the global SBH community. Access to timely diagnosis, information, treatment and multidisciplinary care is still unattainable for many in the global SBH community.

With stigma, discrimination and lack of awareness creating further barriers to the enjoyment of the highest attainable standard of health. Therefore, IF shares with us the theme for World Spina Bifida and Hydrocephalus Day 2021 of “Unlock Your Right to Health”.

The barriers may vary between communities and individuals but the goal of advancing the right to health for all individuals with SBH remains the same. With the WSBHD21 theme “Unlock Your Right to Health”, IFSBH invites SBH associations, individuals with SBH and their families and any other interested stakeholders to explore the barriers to the right to health in their communities and the solutions needed to overcome them.

To better understand, IFSBH have put together the following film.

Events to get involved in:

25th October: Main Event from the 25th October can be watched here

27th October: SBH Scotland's own staff member Kevin O Donnell will be speaking at the 'Aging well with spina bifida and hydrocephalus' event on the 27th October. Register HERE to be sent a link.

29th October: “Digital Escape Room - Unlock Your Rights” side-event” WSBHD21 side-event. The “Digital Escape Room - Unlock Your Rights” side-event is organised by the IF International Youth Group on October 29th at 2PM - 3PM (CEST) to celebrate with you the World Spina Bifida and Hydrocephalus Day 2021.
The event is a digital escape room. Participants will work together to solve a series of clues. Once a group has found all of the clues, the “master of the ceremony” will greet them into the main room. The first team to escape the room is the winner! The objective of this event is to create a festive atmosphere to celebrate WSBHD21 as well as to educate youth with SBH on the UNCRPD.

Register to this side-event here.

Find out the agenda and more information here.

Laila wins Community Champion Award for SBH Scotland

Charity Champion Winner Laila posing for photo with Spiney the Diney Toy during a sponsored walk

An inspiring eight-year old charity fundraiser from East Kilbride has scooped the Charity Champion Award at this year’s ScottishPower Foundation Awards, leading a Scottish trio of success at the annual charity celebration.

Laila McRae was crowned this year’s ScottishPower Foundation Charity Champion for her incredible fundraising efforts for us at Spina Bifida Hydrocephalus Scotland (SBH Scotland), which supports her baby sister, Amber, who was born with spina bifida and hydrocephalus and has been through many surgeries in the first year of her life.

Laila herself was diagnosed with juvenile arthritis – which only affects one in 1,000 children – when she was three, but she has battled through the pain to make a real difference for Amber and others supported by SBH Scotland – raising more than £2,000 in the last year alone. Laila’s fundraising efforts included drawing rainbows of hope and displaying them around her local community with a JustGiving link to SBH Scotland; taking part in the 2.6 challenge during lockdown; and completing the Kiltwalk in April this year – an incredible achievement given her arthritis.

Laila’s success gives an incredible funding boost of £5,000 to SBH Scotland, which her Mum, Leanne, says has made a huge difference for her family.

Deborah Roe, Director of Fundraising at Spina Bifida Hydrocephalus Scotland said: “The past twelve months have been hugely challenging for the voluntary sector and for the families we support. Almost overnight, we had to write off about 50 per cent of our fundraising income. However, thanks to the selfless support of individuals like Laila, we are able to continue supporting families across Scotland affected by spina bifida/hydrocephalus. Laila is a wee star and we can't think of anyone more deserving of the Charity Champion award.”

Laila’s mum Leanne said: “SBH Scotland has supported our family and Amber all the way through her journey. It’s been hard for us, but there was no stopping Laila when she decided she wanted to help! We’re so proud of what she has achieved for Amber and everyone supported by the charity – it was no mean feat, but she did it. She is real inspiration to everyone around her and we’re so chuffed the ScottishPower Foundation has recognised that.”

Also taking a winner’s spot and £5,000 at the 2021 Foundation Awards was Dundee Heritage Trust, which picked up the Community Engagement Award and Paisley-based Street League completes the Scots Awards line-up, receiving £2,500 as runner-up in the Innovation Award category.

The ScottishPower Foundation Awards showcase projects that make a positive impact on people and communities across the country. The successful projects – which support individuals, families and young people from across the UK – range from developing skills for employment, arts programmes and support for mental health to helping homeless people.

They are open to recipients of this year’s ScottishPower Foundation funding, which saw almost £1.2 million awarded to a wide range of outstanding charities. The projects are judged in four categories: Innovation Award, Education Award, Community Engagement Award, and Charity Champion Award – which gives special recognition to the outstanding contribution made by an exceptional employee or volunteer who exemplifies what their organisation stands for.

Melanie Hill, Executive Officer and Trustee of the ScottishPower Foundation, said: “Huge congratulations to this year’s Foundation Award winners and runners-up, who all help improve lives and change lives. It’s so rewarding to be able to honour the amazing work of our Foundation-funded charities through our Awards celebration and, as always, it was an almost impossible task to choose between the finalists.

“However, Laila and her efforts for SBH Scotland and the work of Dundee Heritage Trust and Street League – alongside our other worthy winners from across the UK – all stood out from the crowd in how they went above and beyond to make a difference for others. They epitomise what the ScottishPower Foundation stands for and they are incredible charity ambassadors – not just for their own organisations, but for the whole of Scotland.

“I can’t wait to see how they put their prize money to use and continue their incredible charitable work across the country.”

The full list of winners and runners-up is available on the ScottishPower Foundation website: www.scottishpowerfoundation.com.

If you've been inspired by Laila to Fundraise for SBH Scotland why not contact our Fundraising Team or take a look at our Treks and Challenges pages? Fundraising has never meant more than it does right now - you can make a big difference today.

30 Years is Long Enough

Bowl of flour with wheat on top

Today, Tuesday 20th July 2021 marks 30 years since the UK Medical Research Council’s funded research was published, showing that supplementing the diets of women before, and during, the early stages of pregnancy with folic acid substantially reduced the chance of that pregnancy being affected by Neural Tube Defects (NTDs), such as spina bifida and anencephaly.

Spina Bifida Hydrocephalus (SBH) Scotland have long lobbied for the fortification of flour with folic acid and on this, the 30th anniversary of crucial research being published, we, alongside Shine, the spina bifida and hydrocephalus charity that works across England, Wales and Northern Ireland, have written to Ministers across the UK asking when an announcement on the 2019 UK Government consultation will be given.

Since the publication of this report in 1991, there have been ongoing recommendations for mandatory fortification of appropriate staple foodstuffs with folic acid. The Scientific Advisory Committee on Nutrition (SACN), has repeatedly recommended fortification of flour with folic acid. In 2017 Food Standards Scotland advised that fortification should be undertaken with a joint approach across the UK and following this a joint letter was sent from the Scottish and Welsh governments to the then UK Health Secretary, Jeremy Hunt, urging him to take action and introduce mandatory fortification of flour with folic acid on a UK wide basis.

A UK- Government consultation on mandatory fortification of flour with folic acid concluded in September 2019 and an announcement on the outcome has yet to be made.

The on-going delay in introducing this measure has led, and will continue to lead, to stillbirths, neonatal deaths, disability and avoidable terminations of pregnancy, as well as thousands of individuals facing a lifetime of complex and severe, yet avoidable, health and lifestyle challenges (which also incurs a massive financial implication on the already burdened NHS resources).

From September onwards, after parliamentary recess, SBH Scotland and SHINE will be supported by UK and Ireland’s medical royal colleges, doctors and medical students, dieticians and people whose lives have been affected by spina bifida and anencephaly in attempting to push this up the political agenda and would welcome any support you can give us in sharing our message across our social media channels.

The need for government action is long overdue. The continuous occurrence of preventable birth defects is a tragedy that should no longer be tolerated.

For further information or to discuss involvement in the fortification campaign please contact Clare Cogan Turner, Communications Manager via EMAIL

Find out more about our campaign to date.

SBH Scotland to receive a share of £1.2million funding from ScottishPower Foundation

SBH Scotland member in art workshop

SBH Scotland will receive a share of almost £1.2 million funding from the ScottishPower Foundation, which supports incredible projects that make a positive impact on people and communities across the country.

This year’s Foundation-funded projects – which support art and culture, education and empowerment, citizenship and society, and biodiversity and climate change – were selected on the basis of the significant and lasting contributions they will make to society, while enhancing people’s quality of life.

Almost £9.2 million has been awarded to successful charities since the Foundation was established in 2013.

Spina Bifida Hydrocephalus Scotland’s ‘Tools for Transition’ programme will provide support, advice and advocacy to children aged 0-18 with spina bifida hydrocephalus facing the transition from nursery to primary and primary to secondary school thanks to its £38,419 funding. A bespoke programme of support will be delivered including school talks, continence support, and finance and benefits advice for parents to ensure that children with spina bifida/hydrocephalus have the best possible start in life.

Melanie Hill, Executive Officer and Trustee at the ScottishPower Foundation, said: “Once again, we were overwhelmed by the extraordinary work being delivered in our communities – day in and day out – and we’re very proud to support this year’s charities. The ScottishPower Foundation is committed to supporting projects that make a hugely positive impact on people’s lives and that’s what these organisations do in abundance.

“From improving education to promoting environmental protection and enhancing lives, the charities we’re supporting this year are doing truly transformative work.

“We know that throughout these challenging times, people are relying on the support of charities more than ever before, and with the help of the ScottishPower Foundation, this year’s projects can go further and make a difference for more people.”

Deborah Roe, Director of Fundraising at Spina Bifida Hydrocephalus Scotland, said: “SBH Scotland is delighted to receive a grant from the ScottishPower Foundation to provide education support, advice and advocacy to children and young people with spina bifida and/or hydrocephalus. Children and young people facing the transition from nursery to primary and secondary school will be offered a bespoke programme of support including school talks, continence support and finance & benefits advice for parents; ensuring that children have the best possible start in life.

“Lockdown has been an extremely challenging period for the families we support, with schools and respite services remaining closed until recently. We are extremely grateful to the ScottishPower Foundation, whose support will allow us to provide life-changing education support services across Scotland. Thank you!”

The ScottishPower Foundation was established in 2013 to make a significant and lasting contribution to society, enhancing the lives of people living in communities throughout the UK. It provides funding to help support the advancement of education, environmental protection, arts and culture and citizenship. It also supports charities who aim to provide relief from poverty, disability, or other disadvantages.

Find out more at scottishpowerfoundation.com.

Find out more about SBH Scotland HERE.

Live events are back at SBH Scotland

It's been a long time but the team at SBH Scotland are happy to announce dates for their annual Golf and Lunch events, both taking place in October 2021!

Last year had a devastating impact on SBH Scotland’s annual income and we hope to raise £30K through our Golf Day and We Love Lunch events in 2021 to help continue lifeline support including services co-ordinating check-ins, online groups, essential food, heating, personal care, housing and benefits developed for members during lockdown in order to reduce isolation and support better mental health and wellbeing.

Golf Ball graphic sits on top of a scenic photo of Gleneage's PGA Course

Corporate Golf Day - Wednesday 6th October 2021 - Gleneagles PGA Centenary Course

To celebrate the return of our Corporate Golf Day we’ve chosen the prestigious PGA Centenary Course at Gleneagles to host our annual event sponsored this year by the amazing teams at fatBuzz and VSN Sport. Created by 18-time major winner, Jack Nicklaus, this modern masterpiece of a course played host to the heart stopping excitement of both the Ryder and Solheim Cups. Now comes your chance to follow in the footsteps of champions and join us for a spectacular day of golf with colleagues or clients.

The day itself starts with breakfast rolls followed by 18 holes of golf in a Stableford format, a shotgun start, two on-course games, two course dinner with prize presentation, raffle and mini auction all hosted by ex-footballer, pundit and author, Des McKeown.

We Love Lunch - Sunday 24th October 2021 - Marriott Glasgow Hotel

We've changed the name of our annual lunch but it's back!!! We're putting the heart back into live events with 'We ♥ Lunch'.

Edward Reid will be hosting and performing as well as welcoming a host of guests including Barbra La Bush and Abba A Rival. This is the unmissable lunch of 2021 - With oodles of fun, food, fizz, friends, prizes and disco as well as being deliciously entertaining; you DO NOT want to miss it!

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Our latest news

Unlock your right to health on World Spina Bifida and Hydrocephalus Day '21
Unlock your right to health on World Spina Bifida and Hydrocephalus Day '21Access to timely diagnosis, information, treatment and multidisciplinary care is still unattainable for many in the global SBH community - it's time to unlock your right to health.

Laila wins Community Champion Award for SBH Scotland
Scottish Power Foundation awards crown 8 year old Laila as their Community Champion and donate £5,000 to SBH Scotland

30 Years is Long Enough
A call to action: Mandatory Fortification of Flour with Folic Acid

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