The objective of Advocacy sponsored research is to elucidate the cause/s of NA diseases, find therapies and ultimately a cure through:

  • Supporting clinical studies of patients who are widely and thinly dispersed around the world by sharing up-to-date patients’ case histories in a patient registry available online to qualifying scientists
  • Encouraging junior scientists to study NA diseases and bring together a wider community, including the disciplines of haematology, cell biology, neuroscience and neuropsychology
  • Providing information and training in this disease group to the medical community around the world and maintain strong communication with researchers receiving grants to assure that funds are used for the intended purposes
  • Supporting families affected by these diseases with information and communication that will empower them to take initiative in finding experienced neurologists or working with neurologists who often have never diagnosed or treated any of these conditions.

The rarity of the NA diseases inevitably decreases interest and as a result leads to less scope for research and development.

The relative absence of brain tissue presents another barrier and the Advocacy encourages patients and their families to help address this problem by donating brain tissue to the international tissue banks.

Despite these challenges, much has been achieved since the Advocacy’s inception. This includes  international symposia in Germany, Canada, Japan, the UK, the Netherlands, Italy and the USA, as well as a virtually hosted session from Spain. The Advocacy has also financially supported over twenty research projects and the publication of three textbooks on the disease group.