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Claire Lewis avatar
Claire Lewis

Claire's Albinism Fellowship fundraiser for Jessica

I would like to raise awareness of Albinism for Albinism Fellowship because it's important for people to know the facts

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Albinism Fellowship

Its mission is to provide advice and information about albinism. Raise positive awareness of the condition. Improve self esteem. It provides local events and support through contact people. Encourages the sharing of experiences. Conferences every two years. Twice yearly magazine.

Charity Registration No. SC009443

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Thanks for taking the time to visit my JustGiving page.

I would like to raise vital funds for the Albinism Fellowship and also raise awareness & dispel some myths about Albinism.

Albinism is basically reduced pigment production.

There are two main types of Albinism - Oculocutaneous Albinism (affecting hair, skin & eyes known as OCA of which there are many sub-types) & the rarer Ocular Albinism (affecting just the eyes known as OA). Jessica has OCA, but we don't yet know which of the many types she has.  

People with Albinism always have vision problems.

Albinism is characterized by severely impaired sharpness of vision (visual acuity) and problems with combining vision from both eyes to perceive depth (stereoscopic vision). Although the vision loss is permanent, it does not worsen over time. Other eye abnormalities associated with this condition include rapid, involuntary eye movements (nystagmus); eyes that do not look in the same direction (strabismus); and increased sensitivity to light (photophobia). Many affected individuals also have abnormalities involving the optic nerves, which carry visual information from the eye to the brain.

People with Albinism (PWA) DON'T have white hair (some do) or pink eyes!  Most have very fair skin, light hair & blue eyes, but some people with OCA have dark coloring and brown eyes - never pink!!! Although PWA are more prone to red-eye in photographs due to the light reflecting back, which may account for this myth .  

Apart from not being able to see as well & needing to take extra care in the sun (due to increased risk of skin cancer) people with Albinism are no different to anyone else!  There is no affect on anything else!!!

Albinism is so rare because it is autosomal recessive meaning both (unaffected) parents must carry the gene & even then there is still only a 25% chance of having a child with Albinism.  It's estimated that 1 in 70 people carry the gene, which sounds a lot, but both parents must carry the gene for the same type of Albinism.  The exception is OA which is X-linked & passed from the mother.

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