Barry Stickings – Chairman (Trustee)
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Barry lives in London with his wife Kelly and his son Toby who is now 22. Toby was born with Bilateral Anophthalmia and is now studying for his music degree at University in London. Kelly is currently a Deputy Head Teacher in London

Since leaving school in 1977 Barry has worked in the UK film industry and then worked for an International company spending 3 years working overseas travelling to Europe, the Middle East, Far East and the USA this involved being away from home for 330 days a year abroad. Since 1986 he has been employed in a job that he love sand still enjoys to this day.

When Toby was born no support existed and for several years Kelly and Barry asked many questions but received no answers, but they had strong medical support from the Moorfields team. In 1994 Barry attended a meeting set up by the observer newspaper in London and as a result several members formed MACS. In later years Barry, Kelly and Toby an the AGM and as a result became an observer for the charity. Barry then realised that he had more to offer and for the last few years has been the chairman. Barry cannot express how much he enjoys and treasures the fact that he is in a position to help others with the help of a great team of people. He feels that it means so much to be able to offer advice to parents whose child has been born with a MACS condition. On a personal level Barry says that it has been life changing holding this position in such a wonderful charity.

Barry sees MACS as an important part of his life and sees it developing in the future into a major National Charity that offers more support to children, parents and extended families who have been affected by the MACS medical conditions. He believes that if we help one person it has worked, but he believes that we are helping so many that he may have to change his thoughts on that one.

Barry still loves to travel and spends all his holidays with Toby and Kelly travelling the world, most of all to let Toby experience his love, Roller coaster’s. He has ridden them from Australia to the USA and everywhere in between. They also love the cinema and theatre, good food and trying to keep fit!

The joy of Barry’s life is his son Toby, Barry has said " Toby is an inspiration to me and I know too many who meet him also. I love him dearly"

Barry was elected as an Observer in 2003. He then stood for election as Vice Chairman and was elected in May 2004 and joined the board of Trustees. He is currently Chairman of MACS.

Barry can often be found trying to keep Debby from the Chocolate fountain to allow others to have a turn!

Debby lives in Westcliff-on-Sea, Essex with her husband Gary, and sons Daniel, born in 1990 and Adam who was born in 1995. Adam has Micropthalmia, Coloboma, and Cataracts in his left eye, and also has a high frequency hearing loss.

When Debby left school she was office-based but when her children were born she qualified and managed a pre-school. She is now a learning mentor/teaching assistant in a primary school, a job she loves.

Debby was previously elected as a Trustee for 3 years, and set up regional groups. She returned to the committee in May 2008 when she was elected as an observer. At the 2011 AGM, the post of Vice-Chairman was eliminated and replaced by the Trustee Role of Regional Coordinator, which Debby was elected into - and therefore, returned to the Board of Trustees.

She has recruited, and now manages, our team of 39 regional supporters based in the U.K. and overseas. All are parents of children with the MACS conditions and, as with the committee members, all are dedicated unpaid volunteers.

She is also part of the team that helps ensure the smooth running of our three caravans, and also helps Robbie organise the successful sailing voyages as well as helping him with the rebranding of the Charity.

Debby can often be found defending her stash of chocolate at all times - however, she does share!

Lynda Rhodes – Secretary (Trustee)
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Lynda lives in Holyhead, North Wales with her husband Ian and daughter Angharad and son . Angharad has Microphthalmia and Cataract in the Right eye.

Lynda was elected as Regional Group Secretary in May 2004 and elected to the Board of Trustees as Secretary in 2005.

Gary Murphy – Treasurer & Marathon Coordinator (Trustee)
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Gary lives in Romford, Essex with his Wife, Rachael; Daughter, Lily; and Son, David. They have been with MACS since Lily was born. Lily was born in May 2007 with bilateral Microanophthalmia. Lily attends a play group for special needs once a week, which she loves. She also loves music and cuddles!

Gary was elected as Observer in May 2008 and then elected as Treasurer at the May 2009 AGM. Gary also heads the Marathon Sub-committee.

Gary worked as a Financial Controller for a national children's charity for over 7 years and he continues to use his experience in this area to grow the finance function and ensure the Marathon runs (pun intended) smoothly.

Gary and Debby can often be found conversing in fluent Essexian, much to the confusion of the other committee members!

Jenny lives in Exmouth, Devon. She is married to Tim and they have 3 children Sophie, Ben & Alex.

Ben was Born in 1998 with slight microphthalmia in his left eye with Peters Anomaly and Severe Microphthalmia in his right eye, which was removed at an early age being replaced by an artificial eye. As he has got older the doctors have confirmed his condition is Peters Anomaly Plus Syndrome.

Jennie is looking forward to being a regional supporter and standing in as assistant Secretary for MACS and giving something back to the charity.

Robbie Crow - Youth Events Coordinator
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Robbie lives in Central Scotland with his mother and father. Robbie has Bi-Lateral Microphthalmia, Coloboma and Nystagmus.

Robbie served as our Ambassador from 2007-2010 and then took a brerak for his studies; he then agreed to come back as MACS Ambassador and was appointed such at the 2011 AGM. At the 2012 AGM he was elected into his present role as Youth Events Coordinator.

His main activities within MACS are; coordinating the Annual MACS Sailing Events, assisting with the rebranding of the charity and generally being the face of the charity when needed. Many parents appreciate Robbie's help in the charity as he has lived through the conditoin and knows what it's like.

Robbie is currently at the University of Stirling studying a degree in Marketing with Business Studies and is also a musician, playing the Pipe Band Snare Drum all over the world. He travels regularly to Canada.

Robbie and Debby can often be found beside each other as a double act - especially when there is a chocolate fountain around!

Suzanne Hiley - Independent Observer (Caravans)
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Suzanne was appointed to the position of Independent Observer at the 2011 AGM. We are awaiting her Biography.

Amy Ottaway

Amy was voted in as our Ambassador at the 2012 AGM.