Spina Bifida Hydrocephalus Awareness Week 2018

For five of the seven days of SBHI's Awareness Week (Monday to Sunday, 22nd to 28th October), we will publish two members’ stories on our website: www.sbhi.ie/aw2018 

Then, on World Spina Bifida and Hydrocephalus Day (Thursday, 25th October), we will share information to remind the public and policymakers that spina bifida and hydrocephalus are a reality; that it is imperative to increase awareness about them and improve the lives of people living with these conditions.

On Facebook, Instagram, and Twitter, we will encourage our members and the general public to both read, comment, and share the stories.

A total of 10 of our members, and their parents – from children, to young and mature adults – have graciously and generously agreed to share their #mysbhlife stories of adversity, strength, courage, and determination.

They are doing so in the hope that the shared human experience of their lives will help to educate the public about the conditions and to show other members that they are not alone - that we are united, as one community, by spina bifida and hydrocephalus.

Speaking ahead of the week-long initiative, SBHI CEO, Tom Scott, said, ‘There are thousands of people living with spina bifida and/or hydrocephalus and yet many people in wider society remain unaware of this. This matters as when it comes to understanding the challenges our service users and members face, we need there to be an appreciation in the first place that around 40 babies a year are born with spina bifida, and 1 in 1000 live births are born with hydrocephalus.

‘It will be from here that we can successfully campaign on how we can work together to improve the services on offer and the standard of life available to everyone who knows the conditions to be a reality in their lives.’

Are you ready to take part in SBHI Awareness Week? Great! So, get ready to read and share our members’ stories and don’t forget to use the hashtags: #sbhiawarenessweek #mysbhlife

Other hashtags you can use include: #spinabifida #hydrocephalus #sbhi #disabilityawareness #unityindiversity #worldsbhday2018

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