This being Albinism Awareness Week, I’ve been busy trying to raise public knowledge about this rare genetic disease in the UK. It’s a cause dear to my heart, because both of my daughters were born with albinism.
While albinism isn’t a ‘tear-jerking’ cause like kids’ cancers or abused animals, it is misunderstood and can mean real challenges for those living with it. For instance, those with albinism suffer in strong light the way the rest of us might do when emerging from the interior of a darkened cinema into daylight, and they can also susceptible to sunburn. Levels of support for people with albinism vary widely across the UK.
The Albinism Fellowship is a tiny charity with only around 500 members, and as well as providing support for people with the condition, we’re trying to educate the public and raise money for a UK conference to be held in the autumn of 2013.
I’ll return to this topic shortly, to explain more why I think it should matter to more people (and not just because it’s obviously an issue for my kids). And I will give a run down of the media coverage we’ve secured about Albinism Awareness Week.