Family Support

Welcome to the Family Support Coordinator (FSC) webpage. In our role, we support children, young people and their families affected by Wolfram Syndrome (WS) to ensure they feel fully supported by the healthcare and other support professionals working with them. 

How our FSCs support WS Families

At clinic

As part of our role, we help families with the specialist WS MDT clinics at Birmingham Children’s Hospital (BCH) that families attend typically every 12 – 18 months. We also help families who may be seen in at WS virtual clinic, which is generally every 12 – 24 months. We ensure families have all the information they need before attending clinic. We help families with logistical arrangements such as transport and accommodation during their time at BCH. Our goal is to ensure families have all they need to make their visit as stress free and pleasant as possible.

We personally attend each WS MDT clinic, and we are available to assist families throughout the time they are with us – the Sunday evening before clinic, at Ronald Macdonald House, on Monday and Tuesday during clinic and Monday evening if needed. We can provide both emotional and practical support such as assisting families on where to go, to attend their appointments at various departments within the hospital. The Sunday evening at Ronald Macdonald House is an opportunity for families to come together with the FSCs in an informal setting outside of clinic to ask questions and get to know other families. 

Listening to families is at the heart of what WSUK does. An important part of our role is to gather feedback from families on their experience and opinions of the WS MDT and virtual clinics to help us and the BCH team provide the very best service that meets the needs of families. From time to time, we may also ask you to complete a short feedback survey on our family support service. A summary of your feedback is provided to the BCH team as part of our ongoing contract with the hospital.

In the community

Outside the clinic, we continue to act as an advocate for families. When a new family is referred to the clinic one of us will visit them at home, wherever possible, to find out more about their situation and how we and WSUK can best support them, and to answer any questions the family may have. 

We can also help families access support locally and ensure they have access to the benefits that they’re entitled to. This can include help in securing the best support for their child at school, and ensuring the right provision is in place, or ensuring that they’re receiving all the benefits that they should be (for example universal credit, carers allowance and/or disability child premiums). We can refer/signpost families to external agencies such as SENDIASS, EHCP support, charities in their local area and sensory services. We can attend EHCP meetings and consultations with schools to help support the WS affected young person through their education. We can provide enhanced support to schools by delivering presentations that explain the challenges that WS presents to young people and individuals.

Further to both our roles in clinic and the community, we will also be available during the WSUK annual conference to meet families and answer your questions. 

For more information about the Wolfram clinics at BCH, go to the ‘Clinic Dates and Information’ page on this site – https://wolframsyndrome.co.uk/clinic-dates-information/

WSUK Handbooks

News and Upcoming Events

RNC – The Ultimate Camp Out: Create, Play, Explore – Thursday 7 and Friday 8 August 2026

For young people aged 10 to 13 who has a visual impairment.

Join the Royal National College for the Blind and VICTA on Thursday 6 August for an overnight residential camp that gives young people a real introduction to life at RNC. The event takes place on campus in Hereford and offers a full programme of hands‑on outdoor skills, accessible sports, arts and crafts, baking and classic campfire activities.

The Ultimate Camp Out: Create, Play, Explore Booking Form

RNC Open Day – Friday 18 September 2026, 10am to 4pm

For prospective students and families who have a young person with a visual impairment.

Are you interested in learning more about the Royal National College for the Blind? Come and visit us on Thursday 16 April, and spend the day touring the college campus, including residential areas, teaching facilities, and sports academy. The day includes a free lunch and the opportunity to meet staff and students.

RNC Open Day Booking Form (Page 1 of 8)

RNC – ‘Have a Go’ Activity Weekend – Saturday 24 and Sunday 25 October 2026

For young people aged 13 to 17 with a visual impairment and their families with FREE accommodation for everyone!

This fun-filled taster weekend focuses on promoting independence and includes engaging sessions such as V.I. sports, music production and cooking skills. There is a social Saturday night for the young people to go bowling, while the adults enjoy an evening meal at RNC. Attendance is free and includes accommodation and meals for the whole family.

‘Have a Go’ Activity Weekend Booking Form (Page 1 of 12)

VICTA – Girls and Women blind cricket with VICTA sport and blind cricket England and Wales

~ When: Monday 31 August 2026, 11:30 to 4:30pm

~ Who: 11 to 29 years (females only)

~ Location: Bracknell Cricket Club, Larges Lane, Bracknell, Berkshire, RG12 9AN

~ Cost: Free

~ Closing date: 28 August 2026

Come along and find your new team sport in this free taster for girls and women!

You’ll have the opportunity to learn about the sport and try something new in a supportive and friendly environment. No previous experience is required.

While the main sessions are going on, VICTA Sport will provide spare blind cricket kit for parents and siblings to have a go.

And if you enjoy it, BCEW will tell you how you can then join their regular ongoing blind cricket sessions.

To find out more and get involved, click the link below:

11+ Girls & Women Blind Cricket Taster with Blind Cricket England & Wales – VICTA

 

Join VICTA and Stargardt’s Connected on a magical journey through Hogwarts!

~ When: Saturday 10 October 2026

~ Who: 5 to 17 years

~ Location: Studio Tour Drive, Leavesden, WD25 7LR

~ Cost: £10 per person, under 5s go free. 1 companion ticket available per VI child over the age of 5

Closing date: Monday 24 August 2026

Explore the wonders of the wizarding world this autumn and witness the Great Hall decorated with over 100 floating pumpkins.

The Dark Arts will be more powerful than ever this Halloween! Follow the Dark Mark trail, test your wand combat moves against Death Eaters, and prepare to face Dementors.

On the day we are aiming to secure an Audio Descriptive tour (TBC), and Tactile Tours are available in selected areas of the Studio. We’ll be getting up close to the magic by touching authentic props and fabrics from the Harry Potter films!

The Studio also provides accessible image books to use during the tour (available in Braille or large print). These offer an accessible map of the Studio Tour as well as images and key information about the props on display.

To find out more and to apply click the link: – Harry Potter Studios Family Day with VICTA & Stargardt’s Connected – VICTA

 

My Medical Support

We’re proud to offer our community a practical tool that protects your health and supports our mission.

Thanks to our new partnership with My Medical Support, you’ll get:
✔ 10% off any subscription with code WOLFRAM10
✔ 15% donated to WSUK every time you sign up
✔ Peace of mind knowing your vital medical details are always ready to access – especially in an emergency

👉 Get started here:
https://www.mymedicalsupport.co.uk/?partner=wolfram-syndrome

More information can be found on the ‘Helpful Information for Families‘  page

The Royal Society of blind children has an activity calendar and access to assistive technologies please email: connections@rsbc.org.uk
Activity calendar: Calendar of Activities – RSBC

Over The Wall help children and young people reach beyond the boundaries of their health challenge. They offer both residential camps and Camp in the Cloud, which is their camp-at-home experience. All of their services enable their campers to build confidence by trying new things, creating friends, having fun and making lifelong memories!

To find out more go to their website here. To see the dates of their camps for 2026 click here.

VICTA put on a variety of VI events over the course of each year for children and young adults up to age 29. Some are free, others will have a charge. Events range from VI skiing, camps, sports weekends, family days and so much more.  To find out what they are doing look at their calendar of events here.

Deliver a wish for your child/Young Person – I’m compiling a list of our young people to deliver a wish or dream for them. Please check out the link below to see if your family qualifies and get in touch if you would like me to make a referral to any of the services. https://www.disability-grants.org/holiday-grants-disabled-children.html. This site also provides information about grants for holidays for families with a disabled child.

Disneyland Paris Have you ever dreamed of going to Disneyland Paris? Please follow the link to an external charity Full the Wish, to register for a a chance to go. There is a strict criteria, you must not have received a wish before, and only parents can apply.

 

If you have any suggestions on how we can lead a more youth led service, please do get in touch.