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WS Conference

Our Conferences

Saturday 19th and 26th September 2020 via Zoom

Planning is ongoing for our 9th annual conference, which this year will now be a virtual conference on Zoom.

We now have 2 dates for you, Saturday 19th and Saturday 26th September.

19th September

AM

2 x Urology Workshop – Mr McCarthy (15 person limit for each)

PM

Urology Presentation with Mr Liam McCarthy from Birmingham Children’s Hospital

Times and how to register for these will be sent out soon.

26th September

AM

2 x Ophthalmogy workshops – Talia Treen from Queen Elizabeth Hospital, Birmingham (15 person limit for each)

Speech and Language workshop for swallowing/choking – Georgie Smith from Queen Elizabeth Hospital (15 person limit)

PM

Research into Liraglutide for WS – Drs Mario Plaas and Anton Terasmaa, Estonia

TREATWolfram Update

Ophthalmoogy and Zebrafish research on how WS affects the eye – Mr Patrick Yu Wai Man, Cambridge University and Moorfields Eye Hospital.

Times and details of how to register will follow shortly.

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.