Wolfram Syndrome UK

Our Conferences

2022 WS Conference dates

Dates have been set for this year’s virtual and face to face conferences. As they have proved to be successful we are continuing with a virtual conference which is open to the global WS Community. This is booked for Saturday 24th September.

Our much missed face to face conference is booked for Saturday 1st October at Whittlebury Hall Hotel and Spa. For those that are staying over on the Saturday night there will be a complimentary 3 course dinner.

For those attending the face to face conference and staying over we will ask you to pay WSUK your room costs at the time of booking. In the event of WSUK cancelling you will be refunded. Full details will be in the booking form, accessed below. Registration details for the virtual conference will be emailed out towards the end of August.

1st October Booking Form

2021 WS Virtual Conference Day 2 - 25th September

25th September saw the second of 4 presentations and two workshops as part of this year’s two day virtual conference.

This year is our 10th annual conference and once again was attended by WS members from around the world.

Presentations can be seen below. (Presentation 5 will be added once some of the data in the presentation has been published)

Psychology Workshop – Gayle McKerracher – Consultant Clinical Psychologist at Birmingham Children’s Hospital

Wellbeing and Resilience

TREATWolfram Update – Prof Tim Barrett, Dr Renuka Dias and Dr Ben Wright

Loss of Vision in Wolfram Syndrome – Dr Patrick Yu Wai Man, Cambridge University Hospital

WS Global Patient Registry

Oligodendracytes in Wolfram Syndrome – Prof Lies de Groef

This presentation is unable to go live just yet as there is data that was presented that isn’t yet published. As soon as this happens the presentation video will be added.

2021 WS Virtual Conference Day 1 - 18th September

18th September saw the first of 4 presentations as part of this year’s two day virtual conference.

This year is our 10th annual conference and once again was attended by WS members from around the world.

Presentations can be seen below. (Presentation 4 will be added once some of the data in the presentation has been published)

Novel therapies for Wolfram syndrome – Dr Fumihiko Urano, MD, PhD

Interest in ophthalmology and your review of eye findings in Wolfram, and your interpretation of the effect of Liraglutide and other medicines on visual function, from the Mario Plaas group – Dr Christophe Orssaud

Wolfram Syndrome Global Awareness Day – Tracy Lynch WSUK

Information about the first global awareness day taking place on 1st October and how the WS Community can get involved.

Modelling neuro-retinal symptoms of Wolfram Syndrome in patient-derived stem cells and mice – Prof Vania Broccoli.

This presentation is unable to go live just yet as there is data that was presented that isn’t yet published. As soon as this happens the presentation video will be added.

2020 WS Virtual Conference

Our 9th annual conference was this year held via Zoom due to Coronavirus.

Although this meant we weren’t able to meet up in person, it did allow us to open our conference up to a more Global audience where everyone could join at the same time. This was the first truly International conference for the whole WS Community whether you are an affected person, a family member, clinician or researcher and I’m glad that WSUK were able to facilitate this.

Next year we hope to be able to meet up again in person.

We have some of our WSUK branded re-usable facemasks still available. Details can be found on the shop page on how to order.

Bladder Function in Wolfram Syndrome – Mr Liam McCarthy from Birmingham Children’s Hospital.

Questions and Answers

Ophthalmology Benefits and Apps workshop – Talia Treen from Queen Elizabeth Hospital, Birmingham

Speech and Language workshop for swallowing/choking – Georgie Smith from Queen Elizabeth Hospital

WS and Dysphagia Leaflet

Lifelong treatment with GLP1 receptor agonist in rat model of Wolfram syndrome – Dr Mario Plaas and Dr Anton Terasmaa, Estonia.

Presentation is available on request

Read Lay Summary

TREATWolfram Update – Prof Tim Barrett and Dr Renuka Dias – Birmingham Children’s Hospital and Dr Ben Wright – Queen Elizabeth Hospital, Birmingham.

Optic nerve involvement in Wolfram syndrome – Dr Patrick Yu Wai Man, Cambridge University and Moorfields Eye Hospital.

2019 WS Conference

The 8th annual conference at Whittlebury Hall Hotel was once again well attended. Presentations were given by 3 visiting doctors from Washington University Hospital, Dr’s Fumi Urano, Tamara Hershey and Bess Marshall. Due to unforeseen circumstances Prof Vania Broccoli from Italy was unable to attend, so Federica D’elia from the Italian WS Support Group, Gentian, gave a brief presentation and then Prof Tim Barrett gave an update on the UK’s TREATWolfram trial instead. At the end of the day WSUK Chief Executive Tracy Lynch launched our new website, which has new pages, more information and images.

You can watch the presentations from the day by clicking on the relevant link below.

Dr Fumi Urano giving an update on the Dantrolene trial in USA.

Dr Tamara Hershey from Washington University Hospital speaking about WS and the Brain; what has been learned

Dr Bess Marshall presenting about Diabetes Mellitus and Insipidus in Wolfram Syndrome.

Prof Tim Barrett giving an update on the TREATWolfram trial in the UK.

2018 WS Conference

The 7th annual conference on 6th October was again well attended with some members attending for the first time. We had presentations from some of the Birmingham team, a presentation and workshops held by Philip Warford from Renaissance Legal and Psychology workshops run by Dr Angela Reiersen from Washington University Hospital, USA. Videos from the day can be seen by clicking on the relevant links below.

Dr Denise Williams Adult clinic services and genetics

Prof Tim Barrett – TreatWolfram Clinical Trial Update

Philip Warford from Renaissance Legal

Prof Raj Gupta – Neurology

2017 WS Conference

Clinical Trial Update by Prof Tim Barrett and Kristian Brock (1)

Clinical Trial Update by Prof Tim Barrett and Kristian Brock (2)

Visual Loss in WS’ by Dr Patrick Yu Wai Man

‘USA Trial Update’ by Mrs Stephanie Gebel

2016 WS Conference

Professor Barrett – WS Research Update

Dr Rick Thompson, Findacure talking about Social Impact Bonds

Dr Fumi Urano – Management and Treatment of WS

Presentations from Wolfram Syndrome Conference 2015

Prof Tim Barrett and Prof Karen Morrison -Update on WS Clinical services

Dr Patrick Yu Wai Man – WS and the Eye

Dr Fumi Urano – Management and Treatment of WS

Prof Tim Barrett – Developing treatments for WS in Birmingham

Dr Larissa Kerecuk – Rare Disease Centre at Birmingham Children’s Hospital

Tracy Lynch CEO of WSUK with a charity update

Presentations from Wolfram Syndrome Conference 2014

Prof. Tim Barrett explains the infrastructure of WS research within the UK.

Dr Fumi Urano talking about Patient based Therapeutics for Wolfram Syndrome.

Dr Nicola Beer talking about what happens to your skin biopsy.

Prof. Tim Barrett – ‘Developing treatments for Wolfram Syndrome in Birmingham’.

Presentations from 2012 Wolfram Syndrome Conference

Wolfram Syndrome Information Day – Rachel Bates
Slides from a PowerPoint presentation given by Rachel Bates detailing current at the information day on 20th October 2012. (Includes Notes)

Wolfram Syndrome Information Day – Tracy Lynch
Speech from the 2012 Information Day detailing the year’s fund raising efforts.

Wolfram Syndrome Research
Slides from a PowerPoint presentation given by Professor Tim Barrett detailing current and future research in WS. January 2012.