Raised $19,550.00 #NPCgala #raffle Winners: 1ST PRIZE WINNER H. Busch 2ND PRIZE WINNER E. Pititto 3RD PRIZE WINNER L. Mills Interested in organising your own raffle or fundraiser? Contact us today for free advice and resources.

Following a very productive Annual General Meeting, we welcome our new and returning committee members! On Sunday, the Australian NPC Disease Foundation (ANPDF) team was excited to return (virtually) for our Annual General Meeting. After recommiting to our goals of raising awareness, supporting families, funding research for better treatments, the following committee team was elected; Executive Committee members: Deanna Carpino, President Mandy Whitechurch, Vice-President & Founder Chris Makulski, Treasurer Pip Johnston, Board Secretary Andrew Carpino, Public Officer General Committee members: Marian Shoebridge Mary Calcagno Milva Carpino Ruth Gott Sarah Mercuri Vince Demarte Scientific Advisory Board members: Ya Hui Hung, Chair Ashley Bush Caroline Hastings Felicity Munro Joy Lee Mark Walterfang Pip Johnston Tina Soulis If you wish to #jointhefight for a cure of NP-C, find out How to Help today or subscribe to stay up to date with future opportunities.

The rollercoaster continues, so please join us for the up-swing with only 9 days until the 2022 NPC Charity Gala! Yes, it's true. We have been given the green light to open our indoor dancefloor. So pack away your "I can only wear these if I'm sitting down the whole night" shoes, and get ready! Density limits in hospitality venues have been scrapped, people will no longer need to check in at supermarkets and retail venues, and dancefloors are back. From 9news.com.au Stay tuned for a full update on all COVID restrictions by Tuesday, 22 February 2022. For any queries or concerns on how the ANPDF and Alive Events are planning towards a COVIDsafe event, please contact Deanna on 0420 985 510 or deanna@npcd.org.au. #NPCgala #fundraising

Hosted by the Helping Hands Group, our online event app is now live and accessible from your web browser (no downloads required). ENTER THE APP NOW From our app, Gala guests and fans from home will be able to register to; Buy tickets to our Yard Reno Rescue raffle proudly sponsored by Heidi Build Bid on our Silent Auction Items View our Live Auction Items Donate to the ANPDF towards the total amount raised on the night Get ready for a truly great night and register your account today. Please note that you do not have to be present at the gala to participate in the raffle, although it is only available to residents in Victoria aged 18 and over and will be subject to terms and conditions. #NPCgala #fundraising This 'Yard Rescue Reno' raffle is being held for Australian NPC Disease Foundation Inc. c/o 3 Waller St Benalla VIC 3672. The Raffle commences on the 1st of February 2022, closes on the 26th of February 2022 and will be drawn on the 26th of February 2022 at Flemington Racecourse at 10pm. The draw will be conducted using a Helping Hands Group System draw process. Ticket buyers do not have to be present at the draw. Winners will be contacted by phone and/or email within 2 days after draw. Details of the Winner(s) will be announced at the 2022 NPC Charity Gala, and displayed at www.npcd.org.au. State(s) where tickets are on sale VIC. Persons under the age of 18 years are unable to enter. Prizes are not transferable and non-cash prizes are not redeemable for cash unless otherwise stated or permitted by state regulations. Prizes may be substituted, subject to each participating state's legislative requirements. Some images are display only and may not be a true reflection of the prize. VIC PERMIT NO 10273/21

37 days to go and we are more determined than ever to deliver a fantastic and uplifting event. As with the Australian Open, we have adapted our Gala Dinner to ensure our attendees are as safe as possible. Current COVIDSafe settings (in line with Victorian government guidance) are; Reduced density quotient to one person per two square metres; meaning that our Gala capacity has been reduced from 770 to 700pax. Our indoor dancefloor has been closed; inspiring our events team to create a much more entertaining night with new activities being added to the itinerary. All workers and attendees at the Gala must be fully vaccinated or have a medical exemption unless they are under the age of 12 years and 2 months. All workers and attendees at the Gala will be required to check-in. Masks continue to be a requirement in all indoor settings outside of the home for anyone over the age of eight years old, however once you are seated, they may be removed. Throughout the night, the staff will be (wherever possible); providing seated service for both food and activity participation encouraging physical distancing and minimising patron flow, congregation points and crowding providing hand sanitiser and cleaning equipment and high-touch surfaces Thankfully, due to the spacious and beautiful area in the Atrium room at the Flemington, we are able to maximise ventilation despite being an indoor space. The Gala events team will continue to monitor the guidelines presented by the Victorian Government and continue to adapt towards a safe yet entertaining event. For any queries or concerns on how the ANPDF and Alive Events are planning towards a COVIDsafe event, please contact Deanna on 0420 985 510 or deanna@npcd.org.au. We look forward to seeing you at our second and long-awaited NPC Charity Gala Dinner to celebrate the resilience of the NPC Community, fine food, performance and lots of laughs. Victoria, we have missed you and look forward to joining you again next month. In case your besties missed out on tickets, they are back on sale until February 6th, 2022. #NPCgala #fundraising

"Severely impaired CTL killing is a feature of the neurological disorder Niemann-Pick Syndrome type C1" Read the full article here: Article Link An exciting collaboration of researchers including our own Dr. Ya Hui Hung and Prof. Mark Walterfang, have released a paper exploring the T- and killer-cell function in Niemann-Pick disease type C. "Overall, our study revealed that NPC1 deficiency has a deleterious impact on CTL (but not natural killer cell) cytotoxicity that, in the long term, may predispose NP-C1 patients to atypical infections and impaired immune surveillance more generally."

Raised $344.75+ #sugarfreeziesday #thenonastiesproject Joining the sugar-free movement for a good cause, was our local Swim School in Tullamarine. Prioritising the health, social, educational and recreational needs of Australian children is top of the agenda at The No Nasties Project. Sugar FREE-zies Icy Stix Day is a day where everyone is a champion and where fun, laughs and spectacular times are the order of the day. Sugar FREE-zies are the perfect choice for summer and kids love them! They contain ZERO sugar, ZERO preservatives and NOTHING artificial and they are Australian Made. Thank you to @the_no_nasties_project and @TheNoNastiesProject. Find out more here: The No Nasties Project Interested in organising your own raffle or fundraiser? Contact us today for free advice and resources.

With only 7 weeks to go, we are in the final countdown to our long-awaited Charity Gala Dinner. Join us for a fantastic night of fine wine & dining, dancing, auctions and more! Find out more here or Register Now to secure your seat at this fast-selling event! #NPCgala #fundraising

A fantastic first-time event, put together for those affected by Niemann-Pick disease type C in Australia. Raising an incredible $214,540 from sponsors, auctions, sweepstakes and ticket sales. Patients, Families, people with a medical or scientific background, Professionals and everyone in between, from Victoria and beyond – came together to support Australia’s first Gala Dinner. A fantastic event put together for those affected by Niemann-Pick disease type C in Australia. From a net total raised of $73,164.09, over $50k was received during the gala dinner between live auctions and sweepstake competitions, with many people going home with an awkward number of prizes under their belts. President of ANPCDF Mandy Whitechurch said, “Together we are one for the one purpose of our lives, our children.” All the generous donations and funds raised will be going towards research, education and patient and family centred care. Proudly Supported By Premier Sponsor: Westside Meats Australia Continually investing in all aspects of processing so we deliver premium quality Building on five decades of hard work, honesty, quality & service; Westside Meats is an integrated company that has been in operation since 1963 and proudly known as "the butcher's butcher". Major Sponsor: EnviroPrintGroup Market leaders in environmentally responsible printing. EPG have delivered industry tailored printing services since 2010 whilst meeting rigorous standards in ecological sustainability. Truly a dedicated, close-knit team with a big heart and a fun, responsible approach. Program Sponsors Social Sponsors

Following a very productive Annual General Meeting, we welcome our new and returning committee members! After an exceptionally tough year in 2020, the Australian NPC Disease Foundation (ANPDF) team was excited to return (virtually) for another Annual General Meeting. Every year we battle to raise awareness of Niemann-Pick type C disease in Australia, as well as funds to support our families and research, and 2021 will be no exception! On that note, let's welcome our 2021 team... Executive Committee members: Deanna Carpino, President Mandy Whitechurch, Vice-President & Founder Chris Makulski, Treasurer Pip Johnston, Board Secretary Andrew Carpino, Public Officer General Committee members: Ali Malone Felicity Munro Marian Shoebridge Mary Brock Mary Calcagno Mara Demarte Milva Carpino Sara Sesto Trina Sheehan Vince Demarte If you wish to #jointhefight for a cure of NP-C, find out How to Help today or subscribe to stay up to date with future opportunities.

This lecture will present the Australian collaboration and latest research on NP-C, a rare genetic disorder that leads to childhood dementia. #theFlorey #lecture #research The importance of the patient, clinician and scientist working together, especially for rare diseases, is increasingly recognised as key to achieving better health outcomes for the patient. This lecture will feature presentations from the Australian NPC disease Foundation (Niemann-Pick Disease Type C patient advocacy and support group), Professor Mark Walterfang (neuropsychiatrist) and Dr. Ya Hui Hung (scientist), who are working together with a common goal to improve the health of Niemann-Pick Disease Type C (NP-C) patients. Lectures are recorded and available at florey.edu.au and on the Florey youtube channel after each event.

Raised $3,240.84 Organised by Deanna Carpino #NPCgift4Mum #raffle Winners: G. Bertoncini, Ticket #586 A. Borsato, Ticket #235 T. Soulis, Ticket #515