Our Conferences

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.

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.

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

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

Wellbeing and Resilience

Our 10th WS conference will again be held as virtual events over 2 Saturdays in September.

Saturday 25th September will be a mix of speakers. Events are open to our Global WS community, doctors, researchers and others interested in Wolfram Syndrome or Rare Diseases.

You can register by reading the programme button below.

All presentations will be recorded and posted here after the event.

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.