My name is Kristina and I have OCA1. I have been part of the Albinism Fellowship for most of my life.  My parents used to bring me to events so I could meet other children like me! Albinism is a rare condition which comes with a visible “difference”  It can be quite a tough journey so meeting other people with the same condition is empowering and liberating. This is why I became a trustee.

I live in south east London with my husband and 2 children and work full time at Guide Dogs as a children and young people advisor.  I love taking my doggies for long walks, baking and hanging out with my amazing family and friends.

My husband Andrew and I joined the Albinism Fellowship in 2007 when our eldest daughter was diagnosed with albinism a few months after her birth.

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The diagnosis came as quite a surprise, and it was a considerable relief to find there was a group of friendly, warm and knowledge people out there who had dealt with the same issues and could provide a practical support network. We officially joined the Albinism Fellowship ‘family’ in 2009 at the busy Chester conference, which was a great opportunity to meet other families, make friends, network and become part of something special.

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After our second daughter was born in 2010, also with albinism, I decided I would like to become involved with the charity on a more formal basis and was pleased to become a trustee in 2011.

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I currently run my own business in the care sector. I previously work as a trainer helping improve the skills of sales people who work for a major pharmaceutical company. I  draw on my training, coaching and sales and marketing skills to support the Fellowship. I am based in Nottingham

My name is Eshita and I am of Indian origin, born and brought up in Tanzania and living in London, United Kingdom. 

My career adventures took me to the Charity Sector where I played many different front line line roles, one of which was tackling health inequalities through social prescribing, in partnership with NHS England. I got through the pandemic with a purpose as I was involved in COVID emergency response. 

I have been an active campaigner for albinism and each year during Albinism Awareness, I ask friends, family and colleagues to wear something white and share with at least one person, a fact about Albinism. I have made an inclusive surrounding for myself by voicing my needs. Being an AF trustee means I can continue to raise awareness and advocate for an inclusive world for us all. 

Info coming soon 

I’m a returning trustee to Albinism Fellowship. I’m the  Deputy Lead of the Children, Young People, Families and Education Service at RNIB and I have a particular focus on Scotland, Wales and Northern Ireland in my role. I’m passionate about ensuring that adults, children and young people with vision impairments get the support and resources that they need to meet their goals. As a person with Albinism, I have been lucky to be part of the Albinism Fellowship’s membership for many years, meeting great friends along the way. I hope to work with the other trustees to continue raising awareness about the Albinism Fellowship and the services and events we offer to the Albinism community. 

Info coming soon

I live in the North West of England with my husband and three children. My daughter has albinism. 

I have a PhD in gene therapy and bioinformatics, but currently work as a virtual PA, freelance scientific writer and private tutor, as well as being a school governor and trustee of the Albinism Fellowship.

Info coming soon

Dr James Self BM FRCOphth PhD completed his higher specialist training in Paediatric Ophthalmology in Southampton and Manchester and his research training through an MRC Clinical Research Training Fellowship/PhD in Ophthalmic Molecular Genetics.

Jay’s research interests cover a range of disorders affecting vision in children including nystagmus, albinism, genetic disorders of the eye, amblyopia and paediatric cataract. His team combines expertise in genetics, bioinformatics, wet-lab modelling, eye-tracking and clinical trials.

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Jay is an advisor to 5 vision charities, board member for two charities, Div A representative for the UHS hospital charity, and ambassador for one foundation. He works closely with the Royal College of Ophthalmologists (RCOphth) in a number of roles including member of the genomics working group, member of the paediatric and academic subcommittees, chair of various national masterclass training courses and has represented the college for media communications and guideline development. He is the national chair of the NIHR paediatric and neuro-ophthalmology Clinical Study Group (CSG). He is an advocate of public engagement in science and has delivered many public address lectures and open floor sessions for over 10 years.