For children and adults living with rare neurological conditions like muscular dystrophy, myasthenia gravis or Huntington’s disease, there are currently no treatments to change their long-term outcome.
The only way for people to get treatments for these conditions is to be involved in research.
Pūnaha Io – the New Zealand Neuro-Genetic Research Bank connects New Zealanders with neurogenetic and neuromuscular conditions to researchers and clinical trials from around the world.
Up-to-date data is collected from each patient to link them with appropriate studies. Now, in a world first for many of these conditions, Pūnaha Io is working with Te Ira Kāwai (the Auckland Regional Tissue Bank) to bank samples so that researchers can access samples relevant to the participants’ condition.
These samples will be acquired at particular times in the patients’ disease course and be associated with specific clinical measurements made at those times. Pūnaha Io covers the full range of research from basic science to clinical trials to post marketing of licensed drugs.
There are currently over 1,200 New Zealanders enrolled in the study.
Click here to donate now and help people with rare neurological conditions. When asked, ‘What will your donation support?’ please select ‘Neurogenetic Research’ from the drop-down menu.
If you need help with your donation, email firstname.lastname@example.org or call 09 307 6046.
For more information about the study, please contact Richard Roxburgh at RichardR@adhb.govt.nz.
*Photo above: Richard Roxburgh standing alongside a dewar (samples storage tank) at the University of Auckland’s bio-bank Te Ira Kawai.