MACS (Microphthalmia, Anophthalmia & Coloboma Support), a national charity providing support in West London, dedicated to supporting children and families suffering from rare eye conditions at birth, was delighted to receive news this month of a cash injection that will help support 1,000 more people with rare eye conditions over the next three years.
Every year, around 90 families in the UK will be told their babies have no eyes (Anophthalmia), small eyes (Microphthalmia), or a cleft in the eye (Coloboma). Many will have additional health challenges.
MACS charity enables people with these rare conditions and their families to connect with each other to meet others in similar circumstances and create lasting friendships – reducing feelings of isolation and developing peer support networks for greater support and access to information.
“The emotions were out of control, which is normal after you have a baby, but I’d say this was on another level. After I found MACS the floods of tears and talking to someone who understood was an amazing feeling. I’ve been able to share my worries, and they’ve been met with complete understanding, empathy and practical advice about what the process involves.
I can’t thank the team at MACS enough, and all of the other families who provide us the support we so desperately need. MACS has been instrumental in processing my son’s condition and in figuring out how best to support him.” MACS Mum
There are an estimated 6,800 people across the UK with a MACS condition, and only 1,200 of them currently benefiting from being a member of MACS. MACS the charity provides holistic care for family members and carers too, as they recognise that a diagnosis affects everyone involved in the child’s life. London Masons through the Masonic Charitable Foundation have awarded a multi Year grant that will be used to reach and support 1000 more people, who will benefit from access to emotional, practical and financial support, and regional activities.
When I had my baby daughter Pearl, born without eyes, it was very shocking and I felt l like I was the only mother in the world that this has ever happened to. MACS helps parents and children to know that they are not alone, but actually part of an amazing, active and supportive community” – Alex Giri, mother of Pearl Harris
“I love the MACS sailing trips. They are the best thing that happens all year” – Pearl Harris
Grants are funded entirely by freemasons, their families and friends and the MCF receive approximately 2,500 applications each year. MACS was thrilled to find out they were one of around 400 successful applicants.
Liz Bates, CEO of MACS says, “This funding will make a big difference. We are very grateful to London Masons through the Masonic Charitable Foundation, for recognising the importance and impact of our work and for choosing to be a part of it”.
London Masons Charity Steward Paul King commented, “London Masons are pleased to be able to assist in the amazing charity with core funding over three years. They provide support, understanding and information to families of children suffering from rare eye conditions at birth. This is another example of Freemasons supporting the London community. This follows on from a £2.5 million donation from London Freemasons to London Fire Brigade. The funding provided London Fire Brigade with two extended height aerial vehicles, response cars and ancillary aerial equipment.”
