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Saturday 20th September 2025 – 10:00-17:15

You are invited to attend our annual conference on Saturday 20th September 2025, at Mercure Daventry Court Hotel, Sedgemoor Way, Daventry, NN11 0SG 10.00-17.00 TBC (Registration from 9.00 am).

You will have the chance to speak to medical experts outside of the clinic environment, as well as the chance to meet other families/individuals affected by WS. There will be various workshops and some child friendly activities to take part in as well.

On the Friday evening there will be a social event for those that wish to take part (details to follow) and for those staying Saturday night there is a complimentary 3 course dinner.

There is no charge to attend, lunch and refreshments are provided. Rooms for those wishing to stay over are subsidised, we ask that payment for your share of the room costs is paid at the time of booking your place.

For more information email or phone : admin@wolframsyndrome.co.uk / 01903 211358.

Booking form can be found in the button below.

LAST DATE TO BOOK THURSDAY 28^TH AUGUST 2025.

Here is some information that may be helpful to you with planning your journey to conference:

Nearest Airport

Birmingham International Airport 27.6 miles
East Midlands Airport 39.3 miles
London Luton Airport 43 miles

Nearest Train Stations
Long Buckby                                         3.5 miles
Rugby                                                   8.4 miles
Northampton                                         11 miles

2025 Booking Form

DRAFT Programme - Subject to changes

Conference Presentations

2024 WS Conference - 21st September

21st September saw our annual face 2 face conference being held with a few new community members in attendance. We had a visiting speaker from Amylyx Pharmaceuticals and three of our community sharing their experiences of living with WS. Phillippa organised a fun social event for those that stayed over on the Friday night.

Presentations can be found below. If anyone requires subtitles/captions click on the icon at the bottom of the YouTube screen to enable these.

Pre-recorded presentation from Speech and Language Therapist about WS swallowing issues.

Download Presentation Slides

Living with WS – Abby Gardner, Georgina Carolan and Naomi Bennett talk about living with WS and answer questions from the audience.

Benefits and Student Transition – presented by Zoe Bates, Eye Clinic Liaison Officer at Queen Elizabeth Hospital and Talia Treen, Eye Clinic Liaison Officer at Birmingham Children’s Hospital

Presentation slides

Amylyx Helios Trial – presented by Dr Jamie Timmons from Amylyx Pharmaceuticals.

TREATWolfram Update – Professor Timothy Barrett presenting on an update on the TREATWolfram Trial and the next steps

2024 WS Virtual Global Trial and Research Update 13th April

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.

Q&A

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

Q&A

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

Q&A

2023 WS Conference - 30th September

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)

2022 Conference - 1st October

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

2022 WS Virtual Conference - 24th September

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

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

NEW

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

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

This information was correct as at 6th October 2018.

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.

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