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[Guest guest]

Hey all,

I just wanted to mention that there is an article in The Ottawa Citizen about newborn screening.

Pg A5 - It is titled - "Parents rail against negligent screening"

The article features the story of twins with MCAD - Medium Chain Acyl CoA dehydrogenase deficiency - a fatty oxidation disorder, supported by UMDF.The twins MCADD was discovered when one twin, Isaac, caught a virus and went into crisis. He suffered neurological damage. Consequently his twin Jakob was tested and it was discovered that he also has MCADD. Chances are that Jakob's MCADD will not cause him to suffer the same fate as his sibling because his parents and doctor's know he has the disorder. Early detection is key towards managing this disorder. This is why newborn screening is soooooo important!!!!

The story goes on to mention that while Isaac has suffered neurological damage he is lucky to be alive. They go on to mention our daughter Jenna's sudden needless death from this easily treatable disorder.

The journalist who wrote the story works for Canwest news so the story is also featured in some of their other newspapers such as The Vancouver Sun and the Courier Times.

Please pass this info on. Also, letters to the editor would be appreciated. The Canadian public deserves to hear more about this issue. Not just these little 5 minute televised segments we have been getting lately. (ie: The CBC featured a story on The National with Mansbridge and CJOH - a CTV affiliate featured a story last week, both stories were rather short, about 5 minutes each!!!!!!!!)

Thanks

Tammy

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