2.27.2014

currency and cures

I want a reason to buy the dress on the cover of the mini Boden catalog.  I want a cure.  I don’t know any other children with Batten Disease the way I knew Celia.  I do know they’ll all die without well-funded research.

Hope is expensive.

The purpose of Rare Disease Day, the whole idea behind raising awareness, is simple:
Pharmaceutical companies will never recover the costs of developing treatments for rare diseases.  Even diseases that could potentially “share” treatments (cancer, diabetes, Alzheimer's) don’t add up to enough customers.  But there are scientists who have dedicated decades of work, intelligent men and women bravely battling elusive enemies, championing techniques that change lives.  Supporting their research initiatives and accelerating potential treatments can't be done for free.

Hope is expensive.  But the alternative is unaffordable.
Please let rare diseases gain widespread currency.  Please let rare diseases be cured.

Can a melancholy cry, a distant one day plea, pierce through the social media fog?  We're used to headlines about marauders and earthquakes, statuses about snowstorms and wars.  And we're well-aware that our worry seems small.  But Batten is bigger than the shadow it casts.  And a cure is worth whatever it costs.

There are worthy causes everywhere you look.  Thank you for keeping Celia in sight.

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