A networking and information-sharing site for people who access cerebral palsy services and supports in NSW

Friday, 2 March 2012

Cerebral palsy is an "under-researched" field - really??

Several years ago, the Spastic Centre of NSW (now renamed the Cerebral Palsy Alliance) decided to branch out from its traditional sole role as a provider of services and supports for people with cerebral palsy and their families in NSW, insisting it was essential it also get involved in raising funds for "global medical research" into the prevention, treatment and hopefully even one day cure of CP.
Two of the major justifications advanced for this controversial (to say the least) decision was that "this is a very under-researched field", and that "the potential exists for the Spastic Centre of NSW to lead the world in the search for ways to prevent and cure cerebral palsy".
In pursuit of this new objective (of which, by the way, there remains to this day no mention in the CPA's Articles of Association) the then Spastic Centre of NSW established its own Research Foundation, then set out to raise $50million to enable this Foundation to fund research projects around Australia and internationally.
The Spastic Centre/CPA insists that its new - entirely self-appointed - role as a funder of international medical research in no way distracts it or detracts from the purposes for which it was originally established, by parents, some 65 years ago now - to provide services and supports to people with CP and their families in NSW.
Let's hope so, because services and supports remain desperately inadequate and under-resourced.
But in the meantime, for those who continue to wonder whether there is any validity in the original justifications advanced - ie that this is "a very under-researched field", and that the Spastic Centre/CPA simply has to get involved because so few people anywhere else in the world are doing so - have a look at the website for the Australasian Academy of Cerebral Palsy and Developmental Medicine, which is holding its bienniel conference in Brisbane this coming June. Have a look at the program, and at the long list of eminent medical researchers who will be speaking, from all over the world.
Have a look, too, at the website for the 4th International Cerebral Palsy Conference to be held later this years in Pisa, Italy - http://www.cp2012.it/, or at the website for the CP International Research Foundation based in the US - http://www.cpirf.org/.
And then decide for yourself whether it is actually the case that a State-based service provider simply had to get involved in funding international medical research because this is such "an under-researched field"....

1 comment:

  1. "Let's hope so, because services and supports remain desperately inadequate and under-resourced."

    Well put.

    cerebral palsy & birth injuries