Isle of Wight Association for Spina Bifida and Hydrocephalus

Isle of Wight Association for Spina Bifida and Hydrocephalus We are an Isle of Wight group who provide support to those affected by Spina Bifida and Hydrocephalus HYDROCEPHALUS literally means "water on the brain".

SPINA BIFIDA is a congenital abnormality resulting in the bones of the spine not joining properly, exposing the spinal cord leaving it liable to damage and infection. Surgery shortly after birth lessens the risk of infection but inevitably some disability results. Some are more severely affected and are confined to wheelchairs while others less severely disabled can walk with the aid of callipers

and crutches. Excess cerebral fluid accumulates and if untreated can cause brain damage. Since the early 60s it has been possible to insert a valve to drain the fluid and prevent the build up of pressure. Both abnormalities can occur independently but often occur together. Until 1960 most babies with Spina Bifida or Hydrocephalus died soon after birth, but surgical advancements have enabled many born since then to survive. The Isle of Wight Association members range from babies to adults. We help members by:

Providing special equipment to aid physical development
Provision of financial assistance for mainland hospital and school visits. Social contacts with families with similar problems. Advice and distribution of information on a wide variety of problems. Grants to members to help provide independence through: home furnishing, cars, car adaptions, holidays, career opportunity assistance etc. Outings, parties and meetings. Support for community projects, helping the disabled. Encouragement and support for disabled members to take an active part in Island life. HOW DO WE FUND THIS ACTIVITY? We raise funds through collections at island locations, through street collections, and other fund raising events. We always welcome support from Island groups that raise funds for us, and all of our funds are used to support members with disabilities on the Isle of Wight.

🎶 Isle of Wight Festival Tickets! 🎶We are delighted to share that IWASBAH has kindly been gifted two tickets to this yea...
04/06/2026

🎶 Isle of Wight Festival Tickets! 🎶

We are delighted to share that IWASBAH has kindly been gifted two tickets to this year's Isle of Wight Festival to support our fundraising efforts.

Our fundraiser, Donna, is inviting bids for the pair, with all proceeds helping us continue our work supporting people affected by Spina Bifida or Hydrocephalus across the Isle of Wight.

⏰ Bidding closes on Friday 5th June.

The current highest bid for the pair is £385.

Do you want these tickets? Send us a message with your bid before the deadline!

A huge thank you to the Isle of Wight Festival for their generosity and to everyone who has placed a bid so far.

Good luck! 🎵

Join Us at the IWASBAH Summer Fair! 🎪💛 Don’t forget that our wonderful fundraiser Donna is hosting a Summer Fair on 25th...
28/05/2026

Join Us at the IWASBAH Summer Fair! 🎪💛

Don’t forget that our wonderful fundraiser Donna is hosting a Summer Fair on 25th July, 12:30pm–3:00pm at The Bay Primary School, Sandown, in support of IWASBAH.

There will be games, stalls, prizes and fun for all, with free entry, so do come along and support what promises to be a lovely community event. 🎈

Events like this help raise valuable funds so IWASBAH can continue supporting people living with Spina Bifida and Hydrocephalus on the Isle of Wight.

Whether you can volunteer, attend, or simply help us spread the word by sharing this post, your support means a great deal.

Normal Pressure Hydrocephalus Awareness Week | 18–24 May  This week we are recognising Normal Pressure Hydrocephalus (NP...
18/05/2026

Normal Pressure Hydrocephalus Awareness Week | 18–24 May

This week we are recognising Normal Pressure Hydrocephalus (NPH) Awareness Week and helping raise awareness of a condition that is often misunderstood or mistaken for other conditions.

Normal Pressure Hydrocephalus (NPH) most commonly affects older adults and can be associated with three key symptoms:
🚶 Difficulty walking or changes in balance
🧠 Memory or thinking changes
💧 Urinary urgency or incontinence

These symptoms are sometimes mistaken for ageing, Parkinson’s or dementia, which can delay diagnosis. Greater awareness can help people seek assessment sooner.

While people continue to live with NPH, many people can see meaningful improvement in symptoms with treatment, particularly when recognised early.

At IWASBAH, we want to acknowledge and support everyone affected by hydrocephalus in all its forms, and help raise awareness of the importance of understanding NPH. 💛

Please help us mark the week by sharing this post to spread awareness.

Trip Down Memory Lane We wanted to share this wonderful photo from IWASBAH’s 25th Anniversary Celebration Party in 1994....
12/05/2026

Trip Down Memory Lane

We wanted to share this wonderful photo from IWASBAH’s 25th Anniversary Celebration Party in 1994. It feels special to look back at moments like this and celebrate the history of the association and the community that has been built over the years.

Photos like this offer a lovely glimpse into IWASBAH’s history and the friendships, support and togetherness that have long been at the heart of the charity.

As we continue sharing pieces of IWASBAH’s story, we would love to hear from you. Do you recognise someone you know in the photo?

Please do share your memories in the comments! We’d love to hear the stories behind the picture. Feel free to mention anyone who may have been part of the day.

Dear all members, Islanders facing sudden financial hardship can access support from a new major Isle of Wight Council s...
08/05/2026

Dear all members,

Islanders facing sudden financial hardship can access support from a new major Isle of Wight Council scheme, launched this spring. 🌷

The Crisis and Resilience Fund (CRF) provides fast, practical support when it’s needed most, including:

✅Crisis payment applications – quick financial help for urgent essentials following an unexpected shock, such as an emergency bill, loss of income or a broken essential appliance.

✅Housing payments – additional support for renters receiving Housing Benefit or Universal Credit who are experiencing a shortfall in their rent.

✅Help with rising heating‑oil costs – support for vulnerable low‑income households dealing with sudden increases in domestic heating‑oil prices.

Find out more and apply online:

👉 https://www.iow.gov.uk/article/3454/About-the-Crisis-and-Resilience-Fund-CRF

Phone support is also available:

📞Crisis payment applications, information, advice and guidance: 01983 823660

📞Housing payments: 01983 823950

📞Homelessness support: 01983 823040

Providing a vital new safety net to help Islanders stay secure and supported. ⭐

Please contact the Isle of Wight Council if you want to know more about the support available from the Crisis & Resilience Fund.

Could You Become a Trustee and Make a Difference? The Isle of Wight Association for Spina Bifida & Hydrocephalus (IWASBA...
29/04/2026

Could You Become a Trustee and Make a Difference?

The Isle of Wight Association for Spina Bifida & Hydrocephalus (IWASBAH) is currently looking to recruit two new Trustees to join our Board.

We are looking for:
• One Trustee with a general interest in supporting the charity
• One Trustee to take on a Finance Lead role

As a Trustee, you will help ensure the charity is well-run and continues to support people across the Isle of Wight. This includes:
• Supporting the development of the charity’s objectives and monitoring progress
• Helping ensure the financial viability of the organisation
• Acting as an advocate for IWASBAH within the community

The Finance Lead Trustee will also support budgeting, oversee accounts, and help maintain strong financial governance.

You don’t need previous trustee experience to apply for the general Trustee role, just a commitment to the charity and a willingness to contribute your skills and perspective.

For the Finance Lead Trustee role, we are ideally looking for someone with experience or confidence in financial management, budgeting, or accounts.
To apply, you will need to submit a CV and a short supporting statement outlining what you can bring to the role. A DBS check will be required for successful applicants.

👉 Interested? Find out more and apply here:
https://iwvolunteer.org/opportunity/trustee-8633

The charity will be attending the following events so pop along and support us and the events we are at in the coming we...
28/04/2026

The charity will be attending the following events so pop along and support us and the events we are at in the coming weeks

✨ IWASBAH Through the Years – More Memories from Our Archives ✨ This week, we’re sharing a special snapshot of Gary in h...
31/03/2026

✨ IWASBAH Through the Years – More Memories from Our Archives ✨

This week, we’re sharing a special snapshot of Gary in his child-sized wheelchair, a reminder of the many ways people living with Spina Bifida and Hydrocephalus have navigated everyday life over the years.

Our archives are full of moments that show the resilience, determination, and community spirit of our members and families.

We’d love to hear your memories of IWASBAH over the years—share them in the comments!

Exciting to announce the summer fair date for this year,  its going to be bigger this year with more stalls. It has good...
26/03/2026

Exciting to announce the summer fair date for this year, its going to be bigger this year with more stalls. It has good accessibility, some parking and we look foward to seeing our members.

23/03/2026

🌞 Volunteers Needed – Summer Fayre Support 🌞

Our wonderful fundraiser, Donna, is hosting a Summer Fayre at The Bay Primary School in Sandown on 25th July 2026 to help raise funds for IWASBAH.

Donna is looking for a few volunteers who may be able to spare around three hours on the day to help support the event. 🙋‍♀️🙋‍♂️

This could include assisting with or setting up stalls, helping things run smoothly, or simply lending a hand where needed.

Events like this play an important role in helping us continue supporting people living with Spina Bifida and Hydrocephalus on the Isle of Wight. 💛

If you think you might be able to help, please get in touch with us or comment below and we can pass your details on.

A big thank you to Donna for organising this event and continuing to support the work of IWASBAH. 🌟

Address

Riverside Centre, The Quay
Newport
PO302QR

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