WS Conference

Our Conferences

Our 10th WS conference will be held in 2 ways this year. We will be holding a virtual conference, open to our global community as well as UK, on Saturday 18th September with International speakers. Our usual face to face event will be on Saturday 25th September 2021 at Whittlebury Hall Hotel, Nr. Towcester. This will have the presentations streamed as well as recorded for those unable to attend but would like to hear the presentations live.

on 25th September registration will be from 9.00am with presentations starting from 10.00. The day will finish at 5.00pm TBC.

Details about booking/registering will be sent out over the next few months.

You can book your place and room via the booking form found here or by contacting the WSUK office direct. For those staying over the Saturday night we will provide a complimentary 3 course dinner. Dietary requirements can be catered for.

We ask that you pay your half of your room costs at the time of booking (If you cancel before our cut off date we will refund this). The last date to book your room and reserve your place is Friday 3rd September 2021.

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.

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

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

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.

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.

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

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

Professor Barrett – WS Research Update

Dr Rick Thompson, Findacure talking about Social Impact Bonds

Dr Fumi Urano – Management and Treatment of WS

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

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’.

Download PDF

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)

Download PDF

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

Download PDF

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