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This October, we’re delighted to be partnering with the incredible SASBAH as our Charity of the Month, as they celebrate their 60th anniversary.
The Sussex Association for Spina Bifida & Hydrocephalus supports the health, wellbeing and life opportunities of people with Spina Bifida, hydrocephalus and other related conditions in Sussex.
SASBAH provides vital services including a dedicated health clinic, work experience opportunities, social activities, residential breaks, local support groups, as well as guidance in education, benefits advice, and more. Within the region they support 1200 disabled people, just 350 of them having spina bifida.
Spina bifida is a condition that begins early in pregnancy, when the spine does not develop properly and one or more vertebrae fail to close, leaving a gap. This can cause damage to the spinal cord and nerves, often resulting in paralysis below the affected area. Many people with spina bifida rely on wheelchairs or experience severe mobility challenges, and most also face serious bladder or bowel complications.
While spina bifida is primarily a physical disability, a large number of people living with the condition are also affected by hydrocephalus. Hydrocephalus occurs when an excess of cerebrospinal fluid builds up in the brain. In babies, this can cause the head to swell rapidly and may damage the brain, but it can also develop later in life as a result of trauma, or even appear in older adults for reasons still not fully understood.
Recently, our team had the pleasure of visiting the SASBAH social hub, located on Church Street in Eastbourne. During our time here we got a real insight into life at SASBAH and the incredible work their team does to support adults with learning difficulties. We got to speak first hand with chief executive officer Rom, chef and work experience assistant Dominic and service user Dan.
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Rom said: “There were so many families out there desperate for more help, so we opened up our services to them. It made SASBAH a lot bigger, when I took over 28 years ago we had three staff members, now we have 18 staff members and 160 volunteers. Without our volunteers we wouldn't exist and be able to do what we do.”
SASBAH has proudly partnered with the JPK Project (a charity dedicated to supporting adults with learning disabilities and their families) to create a vibrant social hub within the JPK building. This partnership not only strengthens both organisations’ missions but also opens up new opportunities for the community. With several of JPK’s residential homes located just above the hub, residents can easily take part in SASBAH’s activities and make full use of the facilities, fostering connection and shared support.
At SASBAH’s social hub, service users come together not only to connect and build friendships but also to gain valuable work experience. For over 20 years, SASBAH has partnered with Brewers Decorating Centre, giving service users the opportunity to cut and package wallpaper samples. This simple but meaningful activity provides a sense of purpose, routine, and belonging. For many, securing traditional employment isn’t always possible, so this partnership offers a chance to experience the pride and satisfaction that comes from meaningful work.
Service user, Dan has been part of SASBAH for 27 years, and for the past 20 years he has also taken part in their partnership scheme with Brewers, known as SASPIRE. His connection with SASBAH goes right back to childhood, when his mum first turned to the charity for support. Now, as an adult, Dan continues to be an active part of the SASBAH community. When his mum sadly passed away, SASBAH was there to help Dan secure housing and ensure he had the stability and support he needed to move forward.
Dan said: “I just love it, it’s so brilliant. I come here everyday and I back roll the wallpaper. I also take part in their youth club called Bournefree and get to do trips and social activities like going to the pub.”
During their day at the social hub, service users get the opportunity to get in the kitchen and learn how to cook meals with SASBAH chef Dominic.
Dominic said: “ A lot of service users live in community living and it's very rare they get to all sit down together, so five days a week here they get to sit down together and have a family dinner.
It really helps with teaching them social skills and how to eat properly. When they help cook it builds their self esteem up as their friends are all thanking them for lunch. You can see that little boost and that smile because they have worked hard.”
To celebrate SASBAH’s 60th anniversary, Brewers commissioned local artist Kerry Caffyn to design a stunning mural for the front of the building. The vibrant artwork, featuring flowers, not only brightens the space but also makes the building instantly recognisable. Creating a landmark that sparks conversation and helps everyone in the community know exactly where SASBAH is based.
For more information on how SASBAH can support you or a loved one, visit https://sasbah.org.uk/. To support this incredible charity, donate here.
We can’t thank the team at SASBAH enough for welcoming us into their social hub. We are so excited to help celebrate this incredible charity this month as our chosen Charity of the Month.
Follow our social media platforms for more from our time at SASBAH.
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