WS Conference
Our Conferences
Saturday 21st September – 10:00-17:30 (Registration from 09:00am)
Mercure Daventry Court Hotel, Sedgemoor Way, Daventry. NN11 0GS
Please complete the booking form below if you would like to attend. The programme will follow once confirmed. A social event will be planned for the Friday night for those staying before the conference.
On Saturday 13th April WSUK and The Snow Foundation hosted a virtual global trial and research update for the whole global WS community. We invited four researchers from four different countries to present about their work. Where permitted recordings of the presentations have been added.
Click on each image below to view the presentations.
Neurodegeneration in Wolfram Syndrome: casting a wider net.
Dr Nayana Gaur – PhD, University of Tartu, Estonia.
This video is currently unavailable as it contains some unpublished data.
Unified Care for diverse challenges: Crafting national guidelines for Wolfram Syndrome from diagnosis to care.
Dr Maurizio Delvecchio and Fr Giulio Frontino, IRCCS San Raffaele Hospital, Milan. Italy
TREATWolfram Trial update
Prof Tim Barrett – Centre for Rare Disease studies, University of Birmingham. UK
Diagnosis, management and current and future clinical trials for Wolfram Syndrome
Dr Fumi Urano, Washington University school of medicine, St Louis, USA.
Preliminary results from a Phase 2, open label study evaluating an oral fixed dose combination of Sodium Phenylbutyrate and Taurursodial in Wolfram Syndrome (HELIOS).
Dr Mathias Leinders and Dr Jamie Timmons – Amylyx Pharmaceuticals
Our 2023 WSUK conference was held in a new venue, The Mercure Daventry Court Hotel, Daventry.
New for this year, we ran a couple of Basic First Aid workshops. Those who attended received a participation certificate.
On the Friday night there was a fun, accessible social event (Bingo and quiz) for those who were staying over.
Below are presentations from the day. Unfortunately due to Covid and a train strike, 2 of our presenters were unable to attend in person, so we had them join virtually. This was a first for us to have a mix of live and virtual. This meant that the presenter was unable to hear the questions asked, so there was a delay whilst these were typed in to chat for them to then answer. This therefore causes a few delays during the recordings being presented here. (Better editing is being looked into and they will be updated if possible)
Our first face-2-face conference since 2019 was held at Whittlebury Park Hotel. Please see the presentations below. If you have any questions, please send them to the WSUK office at admin@wolframsyndrome.co.uk
WSUK – Expanding our reach
Presented by John Isherwood – Chair of Trustees
Planning for the Future to protect your child
Philip Warford from Renaissance Legal.
Information correct as at 1st October 2022.
Sports and Activities
Presented by Royal National College for the Blind and British Blind Sports
What’s new in published research, and update on current and future treatment trials.
Presented by Prof Timothy Barrett.
Update from Snow Foundation & WS Global Patient Registry
Stephanie Gebel, CEO and Pat Gibilisco, Patient Advocacy Liaison Officer from the Snow Foundation, USA
Presentations from the virtual conference can be found below.
Therapeutic Development for Wolfram Syndrome – Dr Fumi Urano, Washington University Hospital, St Louis, USA.
Progress and Progression of Diabetes Mellitus in Wolfram – Dr Bess Marshall, Washington University Hospital, St Louis.
TREATWolfram Trial Update – Prof Timothy Barrett
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.
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.
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
NEW
Lifelong treatment with GLP1 receptor agonist in rat model of Wolfram syndrome – Dr Mario Plaas and Dr Anton Terasmaa, Estonia.
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
This information was correct as at 6th October 2018.
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’.
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.
Contact & Company Info
Address: 9 Church Way, Worthing BN13 1HD, UK
Phone: 01903 211358
Email: admin@wolframsyndrome.co.uk
Wolfram Syndrome UK – Registered Charity England and Wales no: 1152445
© 2023 Wolfram Syndrome UK.
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