Research Update

A huge thank you to our medical adviser Professor Michel Michaelides from Moorfields Eye Hospital and Institute of Ophthalmology, UCL who recently joined our Zoom session to give a Stargardt’s research update and hold a question and answer session.

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My sister and I have SD and earlier this year we found our our third generation cousin has also got SD. I believe this is very rare and there is one other family with these connections in SD in Canada. What does this mean? Is our SD somehow different?

It is unusual but not rare; partly given the fact that 1 in 20 to 1 in 50 people are carriers for a fault in the gene ABCA4

Are there any effective treatments so far (gene or stem cells) or other interventions? Also, what we know so far about increased Rab11 transport into CNS axons in vitro in order to increase regenerative abilities?

Are there any homeopathic approaches that would help?

Why do some people get adult onset when others get in in childhood?

Assuming gene or stem cell therapy eventually succeeds in being able to restore all the necessary retinal cells, is there any doubt whether the brain would still be able to interpret renewed signals from the restored light-receptor cells, neurologically?

After the genetic test my daughter 12 years old was diagnosed with a mutation that has only been reported in one other patient. Could that mean that her treatment could be delayed?

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