In Macular Week this year, our focus was on the importance of research and why we urgently need more funding. We asked Dr Amanda Carr from University College London what a difference more funding could make to researchers working in the field, and people affected by macular disease.
"Compared to other diseases there is not nearly enough funding into macular disease, so I’m heartened that the Macular Society’s aim is to dramatically increase funding for research to accelerate progress towards a cure.
"You can see how desperate people are for a cure for a disease that is mostly untreatable and has a huge impact on their lives.
"It is truly inspiring to see how people deal with the condition that they have. For instance, I’ve got to know a patient called Kelly, whose story was shown by the Macular Society during Macular Week. She is incredibly passionate about the science going on and how this could make a difference to her children’s future. It motivates me to do my best to work out why patients like her and her children are going blind and develop new therapies to actually treat these diseases.
"That motivation is really important, because there are so many challenges in this type of research – and being able to get funding is one of them. Having more funding for macular disease research would mean we could find successful treatments and a cure much faster.
"We collect and grow cells from patients affected with macular disease in order to research them and ultimately find a cure. I’ve got Kelly’s cells growing in the lab at the moment. But growing diseased cells is very difficult – they don’t behave as you would expect them to which has been another big challenge. There are lots of challenges that you can’t really anticipate, until they come along and surprise you. That’s the nature of research – we’re in unexplored territory.
"The patients’ stem cells we grow are pretty much like little babies – they have to be fed every day, and in the right way, to keep them alive and help them grow. I have to come in at the weekends to make sure they’re okay! You do invest a lot of time into making them and looking after them, so the research can be completed successfully.
"We never know how close we are to a breakthrough – to making a discovery that might mean a cure for macular disease in Kelly and her boys’ lifetime. The advancements being made in research are huge. I never forget that human embryonic stem cells were only first grown in a dish 30 years ago, and now they’re being used in patients – so it’s definitely a doable thing.
"For inherited macular disease, gene editing could be the key to a treatment. We know gene therapy has been translated quite quickly into clinics and is already available as a treatment for patients with another sight condition. The eye is setting a precedent for these new technologies, so the hope is that gene editing can be quickly translated into clinics and used to treat patients.
"With people living longer now, there’s also going to be a massive epidemic of age-related macular degeneration in the coming years. We need to find funding to either prevent it from developing or to have an effective treatment for it - neither of which we have at the moment. So much more funding is needed to be able to make a difference.
"The more research projects funded each year, the more chances there are that one of them will make a life-changing breakthrough. Having that extra money being put into research will ultimately help us to stop people from going blind, or cure people who have already lost their sight.
"A lot of research is looking at growing new photoreceptor cells - these could be used to replace those lost during macular degeneration. If we can come up with ways of making and transplanting photoreceptors we could help patients who have already lost their sight, something that is currently not possible. That may be a little way in the future, but having the investment now to be able to do the research to develop these therapies in the first place is crucial. The more money that is available for this kind of research, the faster we will find a cure.
"The Macular Society is one of very few charities funding research projects that focus on macular disease. That money is vital for researchers like me to do the important work that we’re doing and for people like Kelly and her sons.
"Every year that we can bring a cure forward by, might be the difference between children today achieving their dreams or seeing them disappear, one by one."