What is Neimann Pick Type C disease?

NPC is a progressive neurovisceral genetic disorder that occurs in 1 in 150,000 births. 80% of affected patients are children, but 20% are adults at the time of diagnosis. NPC predominantly results in neurological difficulties, often initially presenting as problems with co-ordination and eye movements, and over time affecting walking, swallowing and memory. Children often develop seizures and significant learning problems with illness progression. A significant proportion of adult patients develop a mental illness, and this is often the first sign of the disease.

There is currently no treatment in Australia for NPC, and most patients are treated symptomatically for their difficulties with movement and swallowing, and for associated problems (such as psychiatric illness or seizures). Some promising medications are in use overseas for sufferers of NPC, and ultimately research is aimed at preventing illness onset and progression so that people affected with NPC can lead healthy and normal lives, as at present there is no cure for NPC Disease.

Dr. Mark Walterfang
Consultant Neuropsychiatrist
Neuropsychiatry Unit
Royal Melbourne Hospital

Tuesday, May 18, 2010

LADIES PAMPER DAY $ 50.00
1.00PM TO 5.30PM

NPC DISEASE FOUNDATION OPEN MARKET
1.00PM TO 5.30PM
GOLD COIN DONATION

DINNER EVENT $ 25.00
6.30PM TO 11.30PM.

Discounts apply when attending both events. Ladies and Gentlemen all welcome at dinner event. All proceeds go to the Australian NPC Disease Foundation to assist in "Persevering to find a cure for NPC Disease" in Australia and to aid families dealing with Niemann Pick Type C Disease.

Enquiries and bookings to: Mrs Sharon Fanning 0409428396
or Mrs Mandy Jacobs 0409573740

Donations are welcomed at our ANZ Bank account....

BSB NUMBER: 013525 ACCOUNT NUMBER: 572292555

ACCOUNT NAME: AUSTRALIAN NPC DISEASE FOUNDATION INC.

****all donations above $2 are tax deductible... Please contact the foundation for your receipt requirements****************
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Wednesday, May 12, 2010

Radio interview on NPC Disease (abc Radio)

Radio interview conducted on the run up to the Wodonga Ladies Pamper Day and Dinner, broadcasted across the North East and Goulburn Valley of Victoria. Radio compare was the lovely Gaye Pattison interviewing Mandy Jacobs (President of Australian NPC Disease Foundation) and Sharon Fanning (Fundraising Coordinator)

http://blogs.abc.net.au/victoria/2010/05/npc-disease-awareness.html?site=goulburnmurray&program=goulburn_murray_breakfast

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