Albinism Fellowship
P O Box 77
BURNLEY
Lancs., BB11 5GN
To: Potential International Delegates to REAL LIVES
August 2005
Dear Sir or Madam
International Invitation
This is an open letter of invitation to individuals and groups of people from albinism support organisations and other people with a personal or professional interest in albinism from around the world, who are warmly invited to attend the REAL LIVES conference in Edinburgh, Scotland from
18 – 20 November 2005.
Often we receive requests for a formal invitation to the conference, which is sometimes necessary or helpful for making travel arrangements and applying for a visa or funding, and we hope that this letter of invitation is sufficient to respond to these requests.
Whilst international delegates are most welcome to attend the event, we wish to make it very clear that this is simply an invitation to join us at the conference as a delegate at your own cost. We regret that Albinism Fellowship is not in a position to support anyone other than some of our confirmed speakers (with whom we will correspond personally separately) with accommodation, travel or other costs whilst travelling to or in the UK. Neither are we in a position to pay for interpreters. Therefore, all aspects of the event will be in English. You are welcome to bring your own interpreter. If you attend, all of these costs are your own responsibility. We find it very hard to generate enough money to put on the conference ourselves.
Sometimes funding is available from government, employers and other companies or charitable organisations in your own country, especially if they consider that attending a conference will help you develop your knowledge and understanding of a subject and enable you to educate and help other people in your country. We advise you to try some of these sources of funding, which we know have helped others in the past.
There should be sufficient information within this letter or on our website at www.albinism.org.uk to help you write any application letters or make any approaches for funding that you plan. We have provided some background information at the end of this letter on albinism, the fellowship and the conference, which we hope is helpful. We regret we do not have the resources to reply to any further correspondence on funding or other related matters.
You can find information about travelling to Edinburgh and about the conference on our website at www.albinism.org.uk together with booking details. All delegates must complete a booking form in advance. If making payment internationally is difficult please email us at and in a limited number of cases we may be able to consider accepting your payment in UK pounds sterling on arrival at the conference. Otherwise, full payment of the booking fee is required beforehand as we have to use this money to pay for the event.
We hope that albinism representatives of the world are able to join us in Edinburgh in November and look forward very much to welcoming you to the conference.
Yours sincerely
Mark Sanderson
President & Conference Co-ordinator
Albinism Fellowship
&
Chairperson
Albinism World Alliance
(A developing world-wide network of albinism support organisations)
BACKGROUND INFORMATION
The condition
Albinism is a rare genetic condition, associated with a total lack or reduction of the pigment melanin in the body, and a significant visual impairment which cannot be corrected to normal. People with albinsim have to take care to protect their eyes and skin from the harmful effects of the sun, especially to avoid serious problems such as skin cancer. Further information about albinism is available at www.albinism.org.uk
The misunderstandings
Albinism is often misunderstood by people affected by the condition and by the general public. Further work is needed to educate people about albinism so that healthcare for everyone affected by the condition can be improved. This includes education to avoid young parents being told that their child is blind or that they may have a short lifespan (neither of which is true). Other myths surround the condition, including that people with albinism have pink eyes and that they are only born as the result of mixed race relationships (a myth that still exists in some African communities today). Children with albinism often don’t get the right support in school and as a result have a poor experience of education that can affect their future success in life. In Black and other minority ethnic communities myths abound about albinism, including that albinism is a curse, that people with albinism are evil or have special powers, and that they don’t die. These myths continue to affect the lives of people with albinism in adverse extreme ways, especially in Africa, India and China but also in the UK & Ireland. Of course, none of these myths are true. People with albinism are often portrayed in a negative way in films, literature and the media generally. A greater awareness, understanding and action to help people affected by albinism can address these and other issues.
The organisation
The Albinism Fellowship is a self help, sociable and positive organisation run purely by volunteers that aims to provide information, advice and support for people with a personal or professional interest in albinism in the UK & Ireland. The Fellowship’s mission is to:
· Provide information about albinism.
· Raise positive awareness of the condition.
· Arrange opportunities for people to meet and for support.
· Encourage the sharing of experiences.
We achieve the above objectives by providing the services which include a twice yearly magazine; Albinism Life, a website resource, a telephone helpline and assistance through local Contact Persons, regional events and a biannual conference. The Fellowship is a registered charity in Scotland (SC009443) and was founded in 1976 by Dr W.O.G Taylor, a retired Ophthalmologist, who practised in Ayrshire, Scotland and took a keen interest in albinism.
The event
Every two years Albinism Fellowship organises a weekend conference for families affected by albinsim. This event began in 1997 and repeatedly has an incredibly positive impact on the lives of families living with the condition. Opportunities to learn more about and share experiences of albinism cannot be underestimated. People attending the event have witnessed the positive effects on their and or their children’s self-esteem as a direct result of attending the conference. This year’s event runs from Friday 18th – Sunday 20th November 2005 in Edinburgh and comprises a number of presentations, discussions groups and social activities, led by some professionals in the field of albinism as well as people with personal experiences of the condition. Professional childcare and other support services associated with this type of event are provided by the Fellowship. We aim only to pass on the costs of catering at the event to our family member delegates, so as to make the event as financially accessible as possible for everyone. Delegates pay for their own accommodation. International delegates sometimes attend to learn more about albinism to educate people in their own countries, as well as share their knowledge and experience with us.
Prepared by: Mark Sanderson, August 2005
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