Stargardt's Day

Stargardt's Day

Saturday 18th March 2017

About the event

Inspired by conversations with and enquiries from people with Stargardt disease, Stargardt's Day was a free, one-day meeting for people with Stargardt disease, their families and supporters. It was designed in partnership with patients and relatives to make it relevant and meaningful for those who attended.

The aim for this day was to provide an opportunity for those affected by Stargardt disease to: 

  • meet one another and share both experiences as well as hints and tips for daily living;

  • find out about the condition and some of the research being undertaken to address it from researchers and clinicians from UCL Institute of Ophthalmology and Moorfields Eye Hospital;

  • discuss what people feel should be the priorities for the future, with the opportunity to share these with clinicians, researchers and charities supporting people with Stargardt disease and their families.

We would like to offer special thanks to our Stargardt's panel who closely worked with us to design this day.

This event was funded through the NIHR Research Professorship of Professor James Bainbridge and by the NIHR Rare Diseases Translational Research Collaboration funding of Professor Michel Michaelides.

Videos of the talks and discussions from the event will be available on this webpage in due course.

About Stargardt Disease

Stargardt disease - also known as Stargardt macular degeneration, fundus flavimaculatus and juvenile macular dystrophy - is an inherited condition that affects the light-sensitive layer at the back of the eye called the retina.

Stargardt disease is caused by having a defect in one of several genes (ABCA4, CNGB3, ELOVL4, PROM1 or PRPH2), which leads to degeneration of the photoreceptors (the light-sensitive cells required for vision) in a region of the retina called the macula, resulting in a progressive loss of sharp, central vision.

Symptoms often appear in childhood and can also include wavy vision, blind spots, blurriness, impaired colour vision and difficulty seeing in dim light.

Currently, there are no treatments. However, research remains ongoing to assess the potential for a range of novel interventions for this condition.

Speakers

Speakers


Andrew Webster - Consultant Ophthalmologist at Moorfields Eye Hospital and Chair of Molecular Ophthalmology at University College London.

Stargardt's Day Talk: What does current and future diagnosis and management of Stargardt disease look like?

                                                          ~

Michael Crossland - Specialist Optometrist at Moorfields and an Honorary Senior Research Associate at UCL Institute of Ophthalmology. 

Stargardt's Day Talk: What is already available to help me day-to-day with Stargardt disease?

                                                          ~

James Bainbridge - Professor of Retina Studies at University College London, a Consultant Ophthalmologist at Moorfields Eye Hospital and an NIHR Research Professor at the NIHR Moorfields Biomedical Research Centre.

Stargardt's Day Talk: Gene and Cell Therapies for Stargardt disease - where are these at?

                                                          ~

Anai Gonzalez-Cordero - Research Fellow at University College London.

Stargardt's Day Talk: IPS ells for Stargardt disease - why recreate Stargardt disease in the lab?

                                                          ~

Rupert Strauss - Consultant Ophthalmologist at the Department of Ophthalmology, Kepler University Clinic Linz (Austria) and a Honorary Fellow at Moorfields Eye Hospital.

Stargardt's Day Talk: Is there a possibility of a drug therapy for Stargardt disease?

                                                          ~

Andi Skilton - Senior Research Associate and part of the Patient and Public Involvement Team at the NIHR Moorfields Biomedical Research Centre. 

Stargardt's Day Talk: Feedback and Next Steps

Exhibitors

Exhibitors

- NIHR Moorfields Biomedical Research Centrewww.brcophthalmology.org

UCL Institute of Ophthalmologywww.ucl.ac.uk/ioo

Moorfields Eye Hospital NHS Foundation Trustwww.moorfields.nhs.uk

Moorfields Eye Charitywww.moorfieldseyecharity.org.uk

- RP Fighting Blindnesswww.rpfightingblindness.org.uk

Macular Societywww.macularsociety.org

- Fight for Sightwww.fightforsight.org.uk

Royal Society for Blind Childrenwww.rsbc.org.uk

- Metro Blind Sportwww.metroblindsport.org

GiveVision - www.givevision.net

Gallery

Dr Andrew Webster gives the first research talk of the eventMacular Society stand

 

 

 

 

 

 

 

 

Exhibition area at Stargardt's Day

Stargardt's Day patient panel

 

 

 

 

 

 

 

 

Questions and answers chaired by James BainbridgeAttendees participating in the exhibition area

 

 

 

 

 

 

 

 

Information exchange discussionsInformation exchange discussions

 

 

 

 

 

 

 

 

Information exchange discussions

Information exchange discussions

 

 

 

 

 

 

 

 

Interactive posters at the event

Exhibition area at Stargardt's Day

 

 

 

 

 

 

 

 

Dr Skilton closes the Stargardt's Day