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

Wednesday, July 28, 2010

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 in Benalla to celebrate the launch of  the documentary "Shining His Star"
The documentary is about the story of Sam Roberts and how his brave fight with a rare genetic neurological disease, Niemann-Pick Disease Type C, inspired his family and friends to create the “Sam Roberts Family Fund” and the Cycle4Sam epic bike rides.

After the dinner & screening, the riders will head off on their Journey Tuesday morning with local NPCD sufferer's Matthew & Timmy Lloyd leading the charge... stay tuned for updates & photo's.

The dinner & screening will be held at the Benalla Golf Club, Monday 27 Sept 2010 at 7pm. Tickets are $25 per head. Please contact Mandy Jacobs 0409 573 740 with enquiries.

It's been a while.....

So much has been happening since our last update it's hard to know where to start.
Lets talk about the NPCD Pamper Day held in Wodonga first......

WOW..... what a day, we can comfortably say that the day was a success with the people of Wodonga exceeding our expectations with their level of support! Huge big thank you to all the Hairdressers, Make Up Artists, Massuers, Nail Artists, Face Painters, Tarot Card Readers, Wine, Liquer & Cheese Tasting, Photographers, Stall Holders and the amazing volunteers.

We had the most amazing bunch of Ladies purchase tickets and allowing themselves to be pampered, everyone was in great spirits and a great day was had by all :)

Here are some shots from our wonderful photographers :)

Once the Pamper Day had wound down we were full steam ahead into dinner preparations.

Mark Byatt (Wodonga Mayor) along with Matthew & Kirsten Smith, Timmy & Matty Lloyd cut the magnificent NPCD cake, which was later shared with guests as part of the meal.

With a fantastic DJ on board, great music pumped through the speakers and the dancing began. Auctions, giveaways and raffles finished off a great night.

Stay tuned for more updates and upcoming events.