Macular Society Newsletter

Below are the main headlines from the March Macular Society e-newsletter – if you want to read more on any of them, the full newsletter is here:

There is an exciting development for people living with dry age-related macular degeneration (AMD), as the first ever treatment for the condition has been approved for use in the US. While we await more information on when the drug may be available in the UK, you’ll know that this is a huge milestone. We will, of course, keep you posted on any developments.

First drug to treat dry AMD approved for use in the US
The first ever drug to treat dry age-related macular degeneration (AMD) has been approved for use in the US. The Food and Drug Administration (FDA) has cleared the drug pegcetacoplan, known as Syfovre, for use in patients. What does this mean for you?

Inaugural AMD audit highlights importance of regular injections
The UK’s first-ever audit of hospital eye care services for people living with wet AMD has confirmed that regular injections help to stabilise vision in most patients’ eyes and early diagnosis and treatment are vital to maintaining good vision after treatment.

“People don’t consider that there will be a life after diagnosis”
Beverley has been a Macular Society counsellor for more than 20 years. In this time she has spoken to hundreds of people struggling to come to terms with the life-changing diagnosis of macular disease. She shares her own experiences of living with sight loss, as well as practical tips to help you maintain your independence.

Help abolish VAT on audiobooks
Did you know that while printed books are zero-rated for VAT, a 20% VAT rate is applied to audiobooks? This could adversely affect people with sight loss who rely on them. An MP is leading a call in Parliament to abolish this VAT, in support of people with visual impairments. If you also think this should change, you can help by writing to your MP.

Could zebrafish help speed up macular research?
Zebrafish have been extensively used for eye research and recently it has been reported that their eyes have a similar structure to the human macula. At this month’s first My Macular and Me webinar Dr Takeshi Yoshimatsu from the School of Life Sciences at the University of Sussex will be sharing the findings from his recent research, which is looking at whether cells from zebrafish can be manipulated to create a macula and potentially speed up future research.

Reducing the severity of visual hallucinations
Researchers looking into the effectiveness of the common techniques used to reduce the frequency and severity of visual hallucinations, known as Charles Bonnet syndrome, will be joining our second My Macular and Me webinar of the month. Professor Robin Walker and his team from Royal Holloway will be discussing their latest project and how you can get involved.

“There’s a way around everything if you’re determined”
Keen knitter Audrey has described achieving her proudest piece of work to date, as she has proved there is no reason to let her sight loss stand in the way of her passion. “I think I was born with knitting needles in my hands,” she says as she shares her love of the craft and encourages others with macular disease to continue doing the things they enjoy.

Together we will Beat Macular Disease
Become a member today with a six-month free trial to get expert advice and support, as well as updates on treatments and research into macular disease. Join the only community dedicated to finding a cure.

if you want to read more on any of the above news items, the full newsletter is here:

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