Category Archives: Media

ABC TV 1900 Niemann Picks Disease RMH Mark Walterfang

ABC News Interview About NPCD  Continue Reading

Help little Eddie who has two rare diseases, says mum

When Eddie Sharp was diagnosed with a rare disease at birth known as ‘childhood Alzheimer’s’, it was a devastating blow for his family. But then shockingly, when he was two, it was discovered he also had a rare form of cancer, totally unrelated to the other disease. His mum Ali Malone, 41, and dad Peter,…Continue Reading

Cycle 4 Sam – Shining his star…..Part 1

A few photo’s from the Cycle 4 Sam Benalla leg of the ride from Bright to Adelaide. It was wonderful and inspiring to meet Sam Roberts’s family and the Cycle 4 Sam team as they began their 2010 journey. A screening of Sam’s NPC documentary “Shining his Star” was emotional viewing for all whom attended the dinner…Continue Reading

Shining His Star….

The Sam Roberts Family fund third “Cycle 4 Sam” event is approaching and this time it is in our local area. On September 27, 2010 Cycle4Sam III will be held, a 1200km bike ride from Bright in the Victoria high country, to Adelaide, via Bendigo, the Grampians, and Robe. Some 40 cyclists will stop overnight…Continue Reading

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) Reading

Albury Wodonga Midweek Express – 21 April 2010

In the lead up to the Wodonga Pamper Day we are pleased to have the support of the Albury Wodonga Midweek Express. The exposure is invaluable in creating awareness for NPCD within our local communities.Continue Reading

Zavesca/Miglustat update from US FDA Panel shows some hope for Australia

UPDATE 2-US FDA panel backs new use for Actelion drug Tue Jan 12, 2010 5:31pm Stocks Regulatory News Healthcare * FDA decision due by March 10 * Agency usually follows panel recommendations (Adds panelist, company comments) By Lisa Richwine SILVER SPRING, Md., Jan 12 (Reuters) – A U.S. advisory panel on Tuesday recommended approval of…Continue Reading

Newspaper Article – Sept 18th 2009

Click on article for a larger view.Continue Reading