Stargardt's Day

Stargardt's Day

Saturday 18th March 2017

About the event

About The Event

On Saturday 18th March 2017, the NIHR Moorfields Biomedical Research Centre and UCL Institute of Ophthalmology hosted a meeting in London for people with Stargardt disease. The aim of the meeting was to bring together those affected by Stargardt disease, their families and supporters to:

  • Meet one another and share both experiences as well as hints and tips for daily living
  • Find out about Stargardt disease and some of the research being undertaken to address it from researchers and clinicians at the 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

 

In attendance there were around:

- 30 adults and young people with Stargardt’s disease

- 36 parents, friends and supporters

- 26 researchers and clinicians from Moorfields and University College London (UCL)

- 9 charities and research organisations


We would like to offer special thanks to our Stargardt's Day 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.

The full report for the event can be downloaded here: 
PDF iconStargardt's Day Meeting Report.pdf

About Stargardt Disease

About Stargardt's 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 a defect (or spelling mistake) in the gene ABCA4 (a biological instruction), 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. There are some other rarer forms of Stargardt disease or Stargardt disease-like conditions which have other genetic causes.

Symptoms often appear in childhood and can include wavy vision, blind spots, blurriness, impaired colour vision and difficulty seeing in dim light. Currently, there are no treatments. However, research is ongoing to assess the potential for a range of novel interventions for this condition.

Presentations

Presentations

1. Welcome and Introductions

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.

                                              ~~~

2. What does current and future diagnosis and management of Stargardt disease look like?

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

                                              ~~~

3. What is already available to help me day-to-day with Stargardt disease?

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

                                              ~~~

4. Gene and Cell Therapies for Stargardt disease - where are these at?

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.

                                              ~~~

5. Q&A Discussions - James Bainbridge, Michael Crossland and Andrew Webster

                                              ~~~

6. IPS ells for Stargardt disease - why recreate Stargardt disease in the lab?

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

                                              ~~~

7. Is there a possibility of a drug therapy for Stargardt disease?

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

 

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