Meet the Board of Trustees
We are a charity run by volunteers. If you are interested in becoming a volunteers, please email Albinism.email@example.com
Chair of the Trustee
I have been involved with the Albinism Fellowship since I was 3 months olds.
I have a degree in Events Management and love planning and running events, so it was only natural that I take the lead with planning the Albinism Fellowship Events.
My initial interest on the Board of Trustees was with the Conference and other events, but I now am the Chair of the Board of Trustees with a focus on increasing membership through smarter and better systems and technologies.
I love being outside, walks, camping, in the sea, and living near the Gower is Wales is the best place for that!
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.
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.
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.
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 wife and I became members of the Albinism Fellowship in 2008 after the birth of our son who has Albinism. Our very first event was the London BBQ, this was the first time that we had the chance to meet other families and what a great day we had. We gained lots of support, had a great chat with lots of useful information and most of all, met great people. We have not looked back since.
I joined the Trustee Board in 2014 and have responsibility for responding to messages left on our Helpline number and for supporting fundraising.
After completing my BSc Degree in Technical sciences in 2000 I have worked in a variety of roles. I am based in London.
Info coming soon
Info coming soon
Jude Spencer Gregson has Albinism and is now retired. She is a chartered accountant and for almost half her career had roles as a Finance Director in not for profit organisations,
specialising in Further and Higher Education and Charities. Since her retirement Jude continues to support charities in a voluntary capacity. Jude enjoys walking, sailing, travelling
and music. Since retiring she has enjoyed an “adult gap experience” with long travels overseas including a number of sailing adventures on a tall ship.
Trustee (Medical Liaison)
Info coming soon
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.
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.
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.