Search Results

Raised $2,583.00 #bunnings #sausagesizzle A simple sizzling fundraiser courtesy of Bunnings over two days. For info on how to organise your own local Bunnings fundraiser, contact info@npcd.org.au.

Are you game? #fundraising #bingo Amid the coronavirus outbreak, our Aussie NPC Warriors are getting creative and ready to try new things to keep funds flowing towards supporting our families and research for better treatments. Join Donation Bingo for your chance to win a $250 giftcard!

Adapting to the times, our Australian NPC community had the opportunity to connect at this year's conference with our first-ever hybrid-virtual event. Between changing government restrictions, technological issues, and bringing people together with a spectrum of needs, our organising committee and events agency had a lot to contend with! Yet, the conference came together with a lot of fond farewells at the end. #NPCconf2021

Raised $1,325.00 Organised by Ali Malone #NPCbday2020 #raffle Winners: Vicki Malone, Ticket #162 Tracey Willis, Ticket #226 Vicki Malone, Ticket # 159 Angela Jackson, Ticket #175

"Game changer for kids with rare diseases" - Story by Alanah Frost, Herald Sun Images by Jay Town, Herald Sun Read the full article here. The Royal Children’s Hospital (RCH) Foundation has unveiled the Rare Diseases Now (RDNow) program, a groundbreaking initiative that promises to revolutionize the diagnosis and treatment process for children with rare diseases in Australia. Quicker Diagnosis and Advanced Care: The RDNow program aims to provide patients with a diagnosis, treatment, and care within a year of presenting their symptoms. This is a significant improvement over the current situation, where diagnosis can take months or even years. A Collaborative Effort: The program is a collaborative effort by the Murdoch Children’s Research Institute (MCRI) and involves a team of doctors, genetic counsellors, research scientists, and bioinformaticians. They will utilize new technologies and testing methods, including genomic sequencing, to expedite the diagnostic process. The Impact of Rare Diseases: With over 6000 known rare diseases affecting children, and 75% of them having no cure, the RDNow program is a beacon of hope for the 15,000 Australian children diagnosed each year1. Tragically, almost a third of these children will not survive past their fifth birthday. A Personal Story: The article shares the touching story of little Noah Carpino, who was diagnosed with Niemann-Pick disease, type C. This rare condition has only 30 known cases in Australia and currently has no cure. Noah’s mother, Deanna Carpino, expressed how the RDNow program could provide better access to much-needed resources for families like hers. A Step in the Right Direction: Professor David Thorburn of MCRI highlighted that the RDNow program is a step in the right direction, offering a quicker diagnosis which could sometimes be achieved in months instead of years. This new program represents a significant advancement in the care for children with rare diseases, and we at the Australian NPC Disease Foundation are excited about the potential it holds for improving the lives of those affected. To help families like Noah's around Australia, as well as fund vital research for a cure, support the Australian NPC Disease Foundation in its goals of "Research. Cure. Persevere." Ways to support NP-C in Australia: Donate online Shop at our online NPC store Fundraise your way! Check our free resources and inspo online.

Raised $35,265.22 Organised by Kellie Adams #fundraiser #raffle Winners: R. Neale, Ticket #14477 N. Lew, Ticket #06551 D. Chalmer, Ticket #20062 ​ Permits: VIC 10569/19, WA LS213493219, SA M13751

Raised $560.05 Organised by Kellie Adams An afternoon of entertainment held at the All Seasons Hotel in Bendigo. #fundraiser #allseasonshotel

Raised $17,644.95 #fete #opengarden #raffle Our foundation was lucky enough to be the recipient of the 2019 Annual charity event hosted by Villa Verde Gardens. Through various stalls, raffles and activities over 2 days.

Organised by Kellie Adams #shoppingtour #fundraiser Hosted by Kellie Adams, it was an annual adventure beginning in Kangaroo Flats to a number of shopping outlets in Melbourne. 10% of all sales from these outlets were donated to the ANPDF.

Providing an opportunity for both Australian and International professionals to collaborate on all aspects of Niemann-Pick type C Disease. From July 19 to 20, 2019, the Australian NPC Disease Foundation (ANPDF) hosted the inaugural NPC Family Conference at RACV City Club and co-hosted the NPC Scientific Symposium with The Florey Institute of Neuroscience and Mental Health in Melbourne, Australia. “We are so proud to finally be able to bring together scientists, clinicians and patients in the Australian NPC community for the first time,” said ANPDF event organiser Deanna Carpino. “The discussion and awareness can be as equally important as the data generated from the research.” Carpino noted that where the symposium topics were centred around the scientist and clinician perspective, encouraging patient-empowered data; the family conference held a more relaxed, yet informative atmosphere, including sessions focussed on the carers of NP-C patients. The ANPDF provided significant financial support for the families of NPC sufferers to attend, as did many sponsors who supported accommodation, travel, meals and refreshments. Attendees of the family conference were invited to an opening dinner to celebrate our first conference, whilst having a chance to informally meet others from around the country. They gathered together the following day, and were pleasantly welcomed by Mandy Whitechurch, Founder and President of the Australian NPC Disease Foundation. Over the course of 12 sessions, all attendees left the Family Conference understanding more about NPC, feeling more secure about upcoming challenges, and hopefully realising that they have support from many unlikely places within the NPC community. The day was followed by the inaugural NPC Charity Gala Dinner attended by many from both the symposium and the conference. It was a fantastic evening filled with celebration and promises to see each other again. Read more here. 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: The Florey Institute and EnviroPrintGroup Program Sponsors Social Sponsors

Raised $9,000.00 #gofundme #walk #hopeforNoah A 20km walk was organised by a Mother and Son duo through a GoFundMe page and determination. Interested in organising your own raffle or fundraiser? Contact us today for free advice and resources.

Raised $10,000+ #HairShave #fundraising Keely and her friend, decided to shave their heads at the start of 2018 and over the year small events took place to add to the total. There was eight men who had various parts of our bodies waxed leading up to it plus a dinner on the night. There was plenty of donations from people too, which added to a great total. Interested in organising your own raffle or fundraiser? Contact us today for free advice and resources.