Dick Smith Fundraising an Opportunity for Cash for NPCD Research

Hi Everyone, Here is some info on the Dick Smith Foods Charity give away. If you could please help out by taking a photo with a Dick Smith Product and sending it in, nominating the Niemann-Pick Type C Disease Foundation, we may have a chance off our foundation getting some of the money that they…Continue Reading

Fundraising continues with sausage sizzles and cake stalls

The family teams of Aaron and Taylor Adams, Matthew and Timmy Lloyd, and little Eddy Sharp continue to kick goals with fundraising in their local communities. The Adams family conducted a sausage sizzle at Kangaroo Flats IGA with an Easter Egg raffle raising $2000 towards the research goal.  This also included selling of our merchandise…Continue Reading

Axedale fundraiser for NPC Disease

The Axedale Tavern owners Garry and Corrine Cummins have come on board in full swing.  The weekend of May 17th and 18th will see the Tavern come alive with fundraising fun with live music from local performers in Grant Bull and Joanne Woodward, together with Melbourne award winning cover band East Ravine!  A silent and…Continue Reading

USA – UPDATE: NIH/TRND NPC Cyclodextrin Trial

Hello Friends of the NNPDF, We have received the following update from Dr. Denny Porter and Nicole Yanjanin of the NIH/TRND NPC Research Team with regards to the status on the NPC Cyclodextrin Clinical Trials. Dear NPD Community, The NIH cyclodextrin trial has started and the first patient will receive the drug on Monday 2/4.…Continue Reading

Kirsten Smith

“Gone to meet her brother Matty in heaven”. Kirsten passed on Thursday 16th January, 2014. Aged 39 years and 11 months. Donations to foundation in lieu of flowers are appreciated by the Smith family.Continue Reading

Band Bash at Bundalong

Come along to the Bundalong Tavern (7419 Murray Valley Road, Bundalong) and enjoy live music from Melbourne’s Sheila’s of the 70′s and local talent Motnelle and Fanbelt. Entry is $20 per adult or $50 family. Bring the kids for face painting and games, sausage sizzle, trade stalls, and craft and auction selling donated goods. All monies raised…Continue Reading

FDA Approves Request For New Cyclodextrin Treatment For Niemann Pick Type C

FDA Approval Received! Children’s Hospital Oakland Receives FDA Clearance to Begin World’s First Cyclodextrin Administration Into the Brains of Twins with Rare and Deadly Cholesterol Disease Sugar Molecule Used In Common Food and Household Products Like Febreze® Fabric Refresher Called Hydroxypropyl Beta Cyclodextrin (HPßCD) Will be Delivered into Twins’ Central Nervous System in an Attempt…Continue Reading

Cycle 4 Sam – Shining his star… Part II

Matty & Timmy Lloyd chat with Marty before the start of day 2 Mandy & Paul checking out the day’s route. A quick riders briefing before the team head off Releasing 21 pink balloons in memory of Cassie Stallard RIP Paul & Mandy Jacobs lead the team through town in the Truck On their way…..…Continue Reading