Long research tail unites genetic disorder sufferers

Exactly a year ago, one of our bloggers, Kevin from the Genomics Policy Research Unit, wrote a post about a little-known (to me) genetic condition called Friedrich’s Ataxia.

A month later, a sufferer of the condition became the first to add a commenton the post, seeking further help and information.

Since then, four or five more people with Friedrich’s have followed suit, each finding Kevin’s post on the topic, exploring the Genomics Policy guys’ blog (one of the first we created, back in Spring 2005) and chipping in to give their own story – the latest, this week; 12 months after the original article.

They presumably found Kevin’s post by Googling for "Friedrich’s Ataxia (blogging is a very effective way to move yourself up Google’s search results page, because search engines love fresh content that changes often).

Once there, they sought the expertise of our researchers, even one whole year after the initial action – a long tail for professional profile. Kevin didn’t even write a lot about the condition. He mainly just summarised and linked out to BBC News’ story about Friedrich’s earlier that day.

But I’m so proud that, in doing so, not ony has he become a platform for those whose balance, coordination and speech are affected by this affliction; he has also showed how blogs can be used to create an ongoing sense of professional and academic notoriety.

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