Here are the headlines from the Macular Society’s latest newsletter – you can read the full stories here
June update
Welcome to your June e-newsletter. It’s hard to believe we are almost halfway through the year – but why not take a breather and catch up on your latest macular news?
June is an important month at the Macular Society as we come together with you to mark Macular Week – a chance to raise vital awareness of the condition which has a huge impact on so many of our lives. It is also another chance for us to thank you for your endless support and all that you do to raise the profile of macular disease and share the impact it has on you and those you care about.
So have a good Macular Week – we couldn’t Beat Macular Disease without you.
Stargardt pill could slow progression of disease
A new drug to treat Stargardt disease has helped to slow down the progression of the condition in some patients, according to the latest results of a phase two clinical trial.
“The only skill you need is empathy”
Former ophthalmic nurse Helen has spoken of her rewarding new role as a volunteer group leader for the Macular Society and the difference she’s making to people with macular degeneration. As we’ve reached the end of Volunteers’ Week we’d like to say another huge thank you to all of our incredible volunteers like Helen, who make it all possible.
Do you think the tax on audiobooks is unfair?
Sir Mike Penning, Member of Parliament for Hemel Hempstead, does! He has secured a debate in Parliament on taxes on audiobooks, which he says are unfair to those who have lost their sight. But, for this debate to have any impact, we need as many MPs as possible to attend. If you’d like your MP to add their support to the debate, please ask them to attend this month.
“It doesn’t matter how much I can see, it’s just about being able to compete”
From pulling tractors weighing three tonnes, to throwing heavy barrels, 31-year-old strongman Matt is a true inspiration. He does not let his sight loss stand in his way as he continues to push the limits of human endurance.
Living with macular disease: How to retain your independence
The first of this month’s webinars aims to support you in your independence as we ask those living with macular disease more about their experiences and how they cope in their everyday lives. Join us to hear their advice and get tips from experts in living with sight loss.
Advances in genomics
For our second My Macular and Me webinar of the month we’ll be joined by Gavin Arno, senior scientist and researcher from the department of genetics at Moorfields Eye Hospital. Gavin is joining us to discuss the latest advances in genomics and why it’s so important to our understanding of inherited retinal disease.
Watch this space… Macular Week is coming
Macular Week 2023 is Monday 19 to Sunday 25 June, and is a chance to talk about macular disease and the impact it has on people’s lives. We will be sharing the story of 10-year-old Freddie who was diagnosed with macular disease last year. His sight is being stolen; it’s absolutely heartbreaking. We hope you can support us by sharing the story as widely as you can so together we can Beat Macular Disease. Story coming soon…
Macular Society recognised on Best Places to Work list 2023
Every member of staff at the Macular Society works incredibly hard to beat Macular Disease and offer the very best advice and support. It’s great for us to hear that the organisation has proven its commitment to creating an exceptional workplace environment following its recognition in the highly-regarded Sunday Times Best Places to Work list for 2023.
view the Macular Society’s latest newsletter online and read the full stories here
