A Tipperary teenager will be one of the members of SBHI as it launches its First Awareness Week in Ireland for 2016. The aim of World Spina Bifida and Hydrocephalus Day (Tuesday, 25th October 2016) is to raise awareness and understanding, and to advocate and promote the rights of persons with these conditions.
SBHI is celebrating Spina Bifida and Hydrocephalus awareness, not just for one day, but for a whole week with the initiative #WhatsYourStory?
For each of the seven days of SBHI's Spina Bifida and Hydrocephalus Awareness Week (Monday to Sunday, 24th to 30th October), we will publish a member’s story on our website (www.sbhi.ie/aw2016).
Then on Facebook and Twitter, we will encourage our members and the public to both read the story, and for our members to share their stories as well.
Seven of our members and their parents, of all ages, from babies to young children, from teenagers to young and mature adults, have graciously and generously shared their experiences 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.
One of our members sharing his story on Day 3 of SBHI's Awareness Week 2016 (Wednesday, 26th October) is 19-year-old Cillian Dunne from Borrisokane, Co. Tipperary who has his sights set on Tokyo 2020 and competing for Ireland in the Paralympics.
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 because 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 live available to everyone who knows the conditions to be a reality in their lives.’
Are you all ready to take part in SBHI Awareness Week? Great! So what will be your story? Get ready to share and don’t forget to use the hashtag: #WhatsYourStory?
Other hashtags you can use include: #SpinaBifida #Hydrocephalus #sbhi #unityindiversity