12th February 2000 to 12th July 2024
It is with heavy hearts that we announce the passing of Sebastian Chamberlain, who peacefully left us this morning in his sleep. Diagnosed with Niemann-Pick disease type C (NP-C), Sebastian faced his challenges with remarkable courage and a cheeky spirit.
Sebastian, a beloved resident of New Zealand, made significant strides in the fight against NP-C. In 2017, he became the first patient from his home country to participate in the VTS-270 clinical trial, a groundbreaking study aimed at slowing the progression of this rare neurological disease. His involvement in this trial was a beacon of hope for many families affected by NP-C.
This year, Sebastian attended the Australian NP-C Conference and the Minds in Motion Charity Cocktail, events that brought together the NP-C community to share knowledge, support, and camaraderie. His presence at these events was a testament to his enduring spirit and commitment to the cause.
Sebastian’s love for food and his infectious smile will be fondly remembered by all who knew him. He leaves behind his devoted parents, Dave and Alice, who have been his pillars of strength throughout his journey.
As we mourn the loss of Sebastian, we also celebrate his life and the indelible mark he left on the NP-C community. His legacy will continue to inspire and drive the quest for a cure.
Rest in peace, dear Sebastian. You will be deeply missed.
If you have any memories or messages you’d like to share about Sebastian, please feel free to leave them in the comments below. Your support and kind words mean the world to his family during this difficult time.
To join our fight, 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:
Shop at our online NPC store
Fundraise your way! Check our free resources and inspo online.