About Me

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Web person at the Imperial War Museum, just completed PhD about digital sustainability in museums (the original motivation for this blog was as my research diary). Posting occasionally, and usually museum tech stuff but prone to stray. I welcome comments if you want to take anything further. These are my opinions and should not be attributed to my employer or anyone else (unless they thought of them too). Twitter: @jottevanger

Tuesday, August 04, 2009

Spinal Muscular Atrophy links to act on

Yesterday I heard about three separate activities concerning Spinal Muscular Atrophy. This is a nasty disease that kills more infants than any other genetic disorder and in its milder forms leads to varying degrees of disability or threats to mortality. Recently you may have heard about one prominent sufferer of SMA, Baroness Campbell, a commissioner on the Equlity and Human Rights Commission (good profile/interview in the Guardian).
  • There is currently a petition on the Number 10 website seeking more funds for research into SMA, for whilst there are according to Wikipedia various "cures" being trialled there's nothing realistic in the offing. If you feel that, amongst the many competing claims on your taxes, this is a worthy cause, I'd urge you to sign up.
  • Secondly, the Jennifer Trust is a huge boon to sufferers of SMA and their families and is currently on the shortlist for a National Lottery Award for bst health Project, for the quality of its outreach programme. As well as more exposure the award brings a little cash, which would be nice, and of course recognition for the wonderful people that do this work. Again, there are other laudable health projects in the shortlist but we'd love your support in the form a your vote!
  • Finally, I found out that my colleague Adam Monnery (acting head of IT) is doing a charity triathlon which is raising money for a variety of charities, including those supporting ill and disabled children (see the Tri For Life site for more info). Here's his team's Just Giving page. [As an aside, I have to say it perplexes me that the '000s of charities in the UK haven't come up with their own alternative to JG (which takes a slice of the donation), but perhaps the economic benefits aren't worth it.]
Pardon the naked self-interest in this off-topic post, but frankly it's more important than any of the digital heritage stuff I'd usually put up! Thanks for reading.


Pat said...

Phenomenal post (I found your blog through google alerts). My 5 year old daughter has SMA - knowing that others are engaged in fighting this disease is great. Thanks very much for your support.

Jeremy said...

Thank you Pat, it does help not to feel alone in it, doesn't it? We're quite new to this, our youngest being diagnosed late last year, but the Jennifer Trust is really great and though we've not made that much use of it I think we will in years to come. Looks like FSMA is your equivalent in the US. I saw it mentioned on your profile and I hope you're finding that it helps too. Best wishes for your daughter and your family.