Eye Health Care Charity of the Month
MACS celebrated its 30th anniversary in 2024
MACS (Microphthalmia, Anophthalmia and Coloboma Support) is the UK’s national charity dedicated to supporting children born without eyes or with underdeveloped eyes.
Rooted in the values of acceptance, trust, and opportunity, MACS fosters a strong and supportive community of around 3,600 people from over 1,100 families across the UK.
MACS envisions a world where individuals affected by these conditions have the same opportunities as everyone else. With a mission to become the leading authority on microphthalmia, anophthalmia and coloboma, MACS is committed to providing comfort, guidance and advocacy for those impacted.
To achieve this, MACS delivers services across five key areas:
1. Advice and support: providing expert guidance and reassurance to families
2. Making connections: building a strong community through networking and shared experiences
3. Confidence and opportunity: empowering individuals to reach their full potential
4. Giving families a break: offering respite and moments of joy
5. Research and campaigning: driving awareness, advancing knowledge, and advocating for change
Through these initiatives, MACS is dedicated to ensuring that no one faces these challenges alone.
What are the conditions?
Microphthalmia, meaning ‘small eye’, is a condition where a child may be born with one (unilateral) or both (bilateral) eyes that are smaller than usual and have anatomic malformations. While some children with this condition may be blind, others may have some residual sight or light perception.
Anophthalmia means the absence of the eye. A child with anophthalmia may be born without one eye (unilateral) or both eyes (bilateral). In this condition, the eye socket develops differently, which can lead to features like smaller eyelids or changes in the shape of the surrounding area.
Coloboma is a condition where there’s a gap or cleft in one or more parts of the eye, like the iris, retina or optic disc. It happens when a small gap in the eye, present during early development, doesn’t fully close before birth. The effect on vision varies depending on the size and location of the gap – sometimes vision is unaffected, while in other cases, it may cause challenges. In very young children, it can be tricky to determine how coloboma impacts their vision, but doctors gain more insight as the child grows and more precise tests can be done.
MACS is a vital source of support, information and community
How the conditions occur
The exact causes of microphthalmia and anophthalmia are not yet fully understood, but they are believed to result from disruptions in the developmental process as the eyes form during pregnancy. These disruptions may stem from changes in specific genes linked to eye development, with researchers continually identifying more genes involved in these conditions.
External factors can also influence how these genes work. For example, illnesses during pregnancy, such as chickenpox or rubella, or certain medications like thalidomide, have been associated with these conditions. Environmental factors, such as exposure to insecticides or fungicides, have also been linked.
Coloboma, on the other hand, occurs when part of the eye doesn’t fully form during early pregnancy, leaving a gap or cleft in one or more of its structures.
Statistics
- Approximately 114 children are born with MACS conditions each year in the UK
- These conditions can involve vision loss, developmental challenges, or other congenital differences
- To date, more than 90 different genes have been linked to various forms of MAC, highlighting the complexity of human eye development during pregnancy. Researchers are still uncovering the roles of many genes involved in this intricate process
Origin of MACS
MACS traces its origins back to 1993 when a journalist from The Observer began investigating whether pesticides could be linked to microphthalmia, anophthalmia and coloboma – though no scientific evidence has been found to support this. Through his research, he connected a group of parents whose children were affected, and from this shared experience, MACS was born.
At the time, these parents had little to no access to information or support. Many had never met another family facing the same challenges, leaving them feeling isolated and overwhelmed.
Just a year later, MACS became an official charity – and has never looked back. Thanks to the dedication of countless parents and adults with MACS conditions who have volunteered their time and energy, the charity has grown into a vital source of support, information and community for families across the UK and beyond.
Today, all MACS trustees are either parents of a MACS child or have a MACS condition themselves. Their first-hand experiences give them deep insight into the challenges our members face, ensuring MACS continues to provide meaningful and compassionate support to those living with blindness or partial sight.
Last year, MACS proudly celebrated 30 years as a charity, bringing its community together to create unforgettable memories and “a joyous opportunity to connect with our members and truly embody the core values of MACS”.
Support a child
A donation of just £4 a month could bring friendship, confidence, and even adventure to a MACS child.
Each year, 90 families in the UK receive the life-changing news that their baby has no eyes, small eyes, or a cleft in the eye. Many of these children will face additional health challenges, and some parents will be told their child may never see. In these moments, families may feel lost and alone—but they are not. There is hope.
Find out how to support a child through MACS.
Or volunteer
Whether you’re looking for a regular volunteering role or a one-time opportunity, whether you want to meet new people or contribute from home, whether you have specialist skills to share or are eager to learn new ones—we’d love for you to join our amazing team of volunteers!