Check out our new projects page where you can read more about our latest projects that need some good ol'fashioned volunteer power. We have projects and positions that can be completed remotely or in person, by skilled volunteers or someone with great enthusiasm looking to learn! Don't be scared, we got you ;) Got skills but can't find the project? Let us know! Send an email to info@npcd.org.au with your ideas and someone will be in contact with you.

Our hearts go out to a Sydney based family whose little boy had "defied predictions" about his life expectancy only to become the youngest person in NSW to die after contracting COVID-19. Three-year-old Sebastian Moroney was born with Niemann-Pick disease type A which typically manifests in people when they are infants. Its carriers do not often live beyond a few years. #niemannpickA #gonetoosoon #inlovingmemory Read full article here: https://www.abc.net.au/news/2022-01-09/sydney-3yo-dies-after-contracting-covid-19/100745596

Pfrieger's Digest for Niemann-Pick type C: Summaries of research advances on selected peer-reviewed publications in scientific journals. By Frank W. Pfrieger, PhD Institute of Cellular and Integrative Neurosciences Centre National de la Recherche Scientifique / University of Strasbourg Strasbourg, France Read the full article here: Covers the period from May 2022 to September 2022 Now includes publications related to Niemann-Pick type A-B called Acid Sphingomyelinase Deficiency or ASMD. Please feel free to distribute and forward this issue, and to send feedback to: fw-pfrieger@gmx.de or frank.pfrieger@unistra.fr

Raised $2,612.50 #glenarthon #fundraiser #auction A charity live auction dedicated to two different charities.

Raised $12,521.35 An amazing raffle organised by local business to our NPC Warrior, Tommy. Selling out 500 tickets in a record 10 days, we can't thank the amazing Lyn and Mat from Riverina Saddlery enough for their support. Another huge thank you to all those who participated and to those who donated once tickets were sold out. Wow! Just wow! 400 tickets sold in the first three days! And it couldn't have come at a better time. When we texted Pip with an update of how many tickets had been sold over the weekend, her response was, "Being airlifted to Bris this morning. Tommy is having severe seizures." As we waited to hear news, the ticket numbers kept ticking over. Long-term customers, new customers, people getting friends and relatives to buy tickets for them from out of state (and England and the US!), people who we know don't even own a horse! #NPCaustralia #npcraffle #1000th #australianmade #riverinasaddlery #mathewmurray Winners 1ST PRIZE WINNER Ticket Number: #13 From Yackandandah, VIC 2ND PRIZE WINNER Ticket Number: #492 From Alpha, QLD Sponsors and Contributors Interested in organising your own raffle or fundraiser? Contact us today for free advice and resources.

Mark your calendars, roll up your sleeves, and get ready for the NPD Awareness Month! Parents and carers of people suffering from a form of Niemann-Pick disease have had enough. We are watching our children slowly lose their ability to play, learn, walk, eat... and live. Help us raise awareness of the incurable and neurologically degenerative conditions, Niemann-Pick type C (NPC) and Acid sphingomyelinase deficiency (ASMD). In Australia, all known patients affiliated with our organisation have NPC, which is why we say... FU to NPC. All funds donated or raised will be contributed towards supporting families and research conducted at The Florey Institute of Neuroscience and Mental Health. #NPDawareness #CureNPC #NiemannPickOz Join us as we say FU🎗NPC! Follow us on our social media channels to like and share the awareness posts Print a downloadable poster below for your local shop or workplace Donate online to help us fund ground-breaking research or financially supporting families left in the NDIS gap Nominate the ANPDF in your own fundraiser Join us at our Annual Charity Gala in Melbourne Images and Social Posts Below images are available to download or edit online via Canva. #NPDawareness #CureNPC Flyers and Posters Download these print-ready posters for your local business or fundraisers: A3 Posters with crop and bleed marks for professional printing in CMYK (PDF) A4 Flyers ready to print on your local printer (PDF) Annual Charity Gala Join the ANPDF at our exclusive Charity Gala on Saturday 25 February 2023 at the Flemington Racecourse. Help us raise funds to continue research conducted in Melbourne for a cure of childhood dementia caused by Niemann-Pick disease type C. Guests will be treated to fine dining with a three course meal, flowing drinks, unforgettable live entertainment, stunning city views, great prizes, an array of high-quality items and experiences to bid on, and... Dancing! We are also excited to welcome veteran Aussie comedian, Col Cameron, as our 2023 Charity Gala Master of Ceremonies. With over 20 years of performing behind him in a variety of roles including comedian, master of ceremonies, musician as well as writer and producer, weknow that he will bring a unique and genuine feel to the event. Don't miss out on your prefered seating and register now!

On Friday, 24th June, about 30 people from all areas of Niemann-Pick disease joined us for our conference held online and in-person at The Florey Institute of Neuroscience and Mental Health to gain key insights and updates. This conference also served to connect both new and previously diagnosed people with peers, clinicians and researchers. Kicking off at The Mint for a relaxed BBQ dinner and drinks, all of our attending families were able to get acquainted. While our youngest debated the pros and cons of Lego Spiderman, the parents were able to meet and greet new and old faces. Some of us had not seen each other since the first NPC Conference held in 2019! As the youngest settled in with our childcare volunteers - families, researchers and clinicians gathered bright and early at The Florey for our one-day conference. After a quick yet excited announcement of our new merchandise, attendees moved on to the real business at hand. We received updates and information from organisations spanning clinical trials, the latest research and community support at varying levels. Visit our YouTube channel for the uploaded sessions coming soon Or download the conference handbook for information on the sessions presented Thanks to the positive feedback from our first hybrid conference in 2021, we were pleased to deliver another accessible event together. 43 households joined us online from both Australia and overseas throughout the day. Starting at 8.30am and closing at 5.30pm, our attendees left satisfied, yet ready for a good rest. Re-joining us the following day for a recap and lunch, the families once again gathered together before a final farewell. It was a fantastic opportunity to swap stories, advice and tears with other lived-experience experts of Niemann-Pick disease. As the final taxi left for the airport, we said goodbye and wondered... Who will return next year, and how many new faces will we meet. #NPConf2022 #familyfirst #conference Acknowledgments The ANPDF is grateful to their key partners and sponsors that enabled the attendance of our patients from all over Australia both in-person and virtually. Event Partner - Cyclo Therapeutics Venue Partner - The Florey Institute of Neuroscience and Mental Health Major Sponsor - National Disability Conference Initiative Grant funded by the Australian Government Department of Social Services Contributors - Soroptimist International of Melbourne, Machine Screen Printers Streaming Partner - Live Streaming services Thank you to the organising committee; Deanna Carpino, Andrew Carpino, Ya Hui Hung, Pip Johnston, Joy Lee, Mark Walterfang, and Mandy Whitechurch - for their tireless hours that were volunteered for the success of this event. Special mention to first-time ANPDF volunteer, Tailah Griffin, for her help on the day as both photographer and attendee coordinator and returning host, Felicity Munro. Thank you to all the new and returning speakers who kindly gave their time to delivering their experience and expertise to our Australian audience. Thank you to all involved. Our lucky attendees received one of our new Pom-Pom Beanies to take home and survive the Aussie winter season. You can also support our NPC Warriors by getting yours today:

Pfrieger's Digest for Niemann-Pick type C: Summaries of research advances on selected peer-reviewed publications in scientific journals. By Frank W. Pfrieger, PhD Institute of Cellular and Integrative Neurosciences Centre National de la Recherche Scientifique / University of Strasbourg Strasbourg, France Read the full article here: Covers the period from September 2021 to April 2022 Please feel free to distribute and forward this issue, and to send feedback to: fw-pfrieger@gmx.de or frank.pfrieger@unistra.fr Meet Frank at our upcoming NPC Conference for pre-recorded lecture and live Q&A session. Tickets are available to purchase online here:

The ANPDF is proud to welcome Machine Screen Printers as our newest NPC Champion! Proving that strangers are just friends waiting to happen... Machine has come on board to support us with our 2022 NPC Conference tote bags and screen printing. Thanks guys! About Machine Screen Printers www.machinescreenprinters.com.au A family business, run by husband and wife team Jochen and Rebecca Orr, with a passion for t-shirts and screen printing that runs deep. Founded in 1999, they have built their business to now be one of the leaders in the screen printing industry priding themeselves on quality and service.

Dementia-CONNECT: Connecting the dots in Childhood Dementia disorders Researchers at The Sydney Children’s Hospital Network (SCHN) are seeking volunteer research participants to help identify commonalities in the symptomology of childhood dementia disorders. You are eligible to participate in this research if you are an individual or caregiver/guardian of an individual who has been diagnosed with a genetic condition associated with childhood dementia. What does participating in this research involve? If you decide to take part you would be invited to complete an online or hard copy survey that comprises of several tools to assess behavioural, cognitive, and developmental characteristics of the individual with childhood dementia. In addition, it asks questions that aim to capture the impact that childhood dementia has on psychosocial outcomes for an individual’s family/caregiver(s). This survey should take no longer than 40 minutes to complete. To learn more about the research study or to enquire about participating, please contact: Name: Jason Djafar Email: j.djafar@unsw.edu.au Project overview This project aims to investigate the common symptoms between disorders which cause progressive neurocognitive decline and loss of skills in children. We aim to uncover the size, scale, and impact of these conditions and the psychosocial outcomes for families. We hope that by grouping all these conditions together under the term of childhood dementia will raise more awareness and build momentum behind research for this field. We aim that this project will provide the foundation to guide future research, inform better guidelines for management and increase understanding about diagnosing and tracking the progression of these conditions. With exciting developments in the pipeline for childhood dementia across Australia, having this data will be invaluable for future directions to improve treatment and care. This study has been approved by the Sydney Children’s Hospital Human Research Ethics Committee (2022/ETH00240)

The ANPDF is proud to welcome Urban Caravans as our newest NPC Champion! Through a familial connection from one of our general committee members, we are excited to be able to raise awareness of Niemann-Pick disease to a whole new network of people. Kicking off at The Melbourne Caravan Supershow, April 6th - 10th, this fantastic company will help us raise awareness and donate from every sale at the show. Legends! To complete your expression of interest for the show, visit Urban Caravans online here: https://urbancaravans.com.au/eoi-caravan-show/ About Urban Caravans https://urbancaravans.com.au/ Urban Caravans is one of the few manufacturers of caravans that uses tig welds in the manufacturing process. These tig welds allow for a tough no rot aluminium frame that produces a long lasting and sturdy caravan. These caravans are ideal for semi off road or full off road use. About The Melbourne Caravan Supershow https://caravanshow.com.au/ The Caravan Caravan, Camping & Touring Supershow is the longest running caravan show with the 2022 edition to be the 69th consecutive running of the event. 2022 also celebrates the 70th year since the Association’s inception! The event's humble beginnings trace back to 1954 on parkland near where the Arts Centre of Melbourne sits today. The Supershow is the biggest, the best and the most well attened caravan and camping event in Victoria.

The second NPC Charity Gala was held February 26, 2022 - close to 2 years after the original date in Oct 2020. It was a great success, raising a little over $50,000 net for research conducted at The Florey Institute of Neuroscience and Mental Health. For an event that many believed would barely break-even, we are so thrilled to have delivered on a truly engaging night that raised fantastic awareness and funds for research on NP-C treatments. The 2022 NPC Charity Gala faced many unique challenges, right up to the last week when we excitedly included dancing back into the event and removed masks from our list of requirements. The night kicked off early with our corporate VIPs and NPC families at an early VIP Reception overlooking the racecourse for a meet and greet. However, the gala really began when the students from the Patrick School of the Arts Academy took the stage with their fantastic performance. Thank you @melbournefollies and @patrickschoolofthearts! Guided by our MC Michael Pope, gala attendees enjoyed a delicious 3-course meal sprinkled with loads of entertaining and genuine moments. Our founder and vice-president, Mandy Whitechurch kindly shared her journey and passion in an opening interview with Pope, before we were also introduced to our resident street artist. Damian is an incredibly talented Mural and Street artist who shared his vision with the room, allowing us to witness the completion of the NPC Custom Artwork that was later auctioned live. We walked in the shoes of someone who has invisible symptoms thanks to the Australian premier Niemann-Pick UK's short film launch. And felt the rush as we witnessed the record-breaking sale of the Kobe Bryant signed guernsey sold at live auction. Without losing sight of our goals, the whole room helped us to raise awareness by joining in our Bingo game, in which 30 lucky players walked away with a cooking experience voucher. And we were excited to offer the chance to win more prizes through our quiz/horse race game that had to be seen to be believed. Yet, it wasn't until we finally announced the winners to our Heidibuild 'Yard Reno Rescue' Raffle, that our attendees could finally let their hair down. Read more about the raffle results here. While there is always room to improve, the main feedback we had was, "I wish there was more time for dancing!" It was an incredible effort from our events team to deliver an event that pivoted multiple times around postponements, government restrictions, attendee changes and agenda changes - and still deliver a great night. The ANPDF would like to extend a grateful thank you to Alive Events Agency for their fantastic work. To all of our event partners, sponsors and contributors - thank you. Bringing hope and funding to our community is no mean feat, and we couldn't do it without you. We hope each antendee enjoyed the night, and look forward to seeing you all at the next NPC Charity Gala! Don't forget to leave your feedback below. Link to the full Events Gallery here. #NPCgala