The Advocacy calls for research grant proposals when we are able to make seed money grants from $5,000 up to $100,000 to encourage investigations into the pathophysiology and the related red blood cell abnormalities as well as the diagnostics, epidemiology and genetics of the NA syndromes.

NA diseases are monogenic movement disorders associated with degeneration that begins in the basal ganglia. NA strikes generally in the third or fourth decade with phenotypes resembling Huntington’s and Parkinson’s disease. The NA diseases are characterized by acanthocytic red blood cell membranes. We hypothesize that acanthocytosis relates to a malfunction in the membrane that in neurons may hamper normal autophagy and lead to cell death.

The rarity and wide geographical spread of the NA diseases have contributed to a number of different researchers, principally in Australia, Austria, Canada, France,  Germany, Great Britain, Israel, Italy, Turkey and the United States pursuing specific studies of the elements of the NA phenotypes including descriptive history of the development of the disease, the abnormalities of the erthrocytes and the function of the VPS 13A protein that is absent in chorea-acanthocytosis. And since acanthocytosis is part of the NA diseases’ clinical manifestations, the study of acanthocytes may offer the possibility to progress in the disease knowledge, to identify new cell signalling pathways towards either membrane proteins or transport systems.

Grant Decision-Making Process

How to apply

Grant Proposals may be submitted at any time.

Application for grants is competitive. Assessment of applications is based on peer-review. External referees comments are sought on applications and are considered by the Advocacy’s Scientific Advisory Panel of qualified professionals who are not grant applicants. An interview may be a part of the assessment process. The funding committee will abide by the Code of Conduct of the Association of Medical Research Charities (AMRC) that protects the confidentiality of the decision making process. No contact with individual committee members may be made. All requests for information must be referred to the Advocacy.

Feedback on applications is provided solely at the Advocacy’s discretion and is intended to convey the substance of the independent scientific critique of the proposal in order to help the applicant. Although the Advocacy is normally willing to relay the view of its referees, it is not prepared to discuss the merits of the individual referees’ opinions.

Program grant applicants may have the opportunity to comment on the referees’ opinions before the meeting of the funding committee at which the applications will be considered.


Applications for grants may be sent to the Advocacy ( throughout the year. Generally decisions are made within three months.

Grants are made under conditions similar to those of the AMRC.


Holders of Advocacy grants are required to send short interim reports at agreed intervals as well as two reports in the final months of their awards. The information provided enables the Advocacy to assess the research it has funded and is an important part of our accountability to our supporter and the public.

The two final reports required are:

  • A financial statement of expenditure incurred against the grant.
  • A report on the work undertaken, achievements and outcomes, including an explanation of any significant variances between sums awarded and actual expenditure under particular cost headings.

Research Goals

The Advocacy’s medium-term goal is to identify the pathway to neurodegeneration in the NA diseases and eventually to find therapies to delay or prevent the development of neuroacanthocytosis.

We are especially interested in:

  • The function of the protein Vps13A (chorein) that is missing in chorea-acanthocytosis,  the most common of the NA diseases.
  • Shape, folding, and abnormal folding of VPS13A, and XK proteins
  • Genome-wide association search for other mutations in NA patients
  • Relationship of acanthocytosis to cell malfunction and death
  • Development of animal or cell models
  • Work on the established registry of neuroacanthocytosis patients
  • Study of natural history of NA diseases in comparison to Huntington’s and Parkinson’s diseases
  • Protein interactions in NA diseases
  • Scope of investigation.

Applications from principal investigators not currently pursuing NA research are welcome if their specific expertise, together with proof of project feasibility and relevance, can provide novel approaches to the identification of disease mechanisms and therapeutic targets for NA.


The Advocacy’s aim and expectation is to promote close collaboration between all researchers in the field of Neuroacanthocytosis, including the investigators supported by previous grants, as well as with the European Multidisciplinary Initiative on Neuroacanthocytosis (EMINA). Special consideration will be given to applications that demonstrate collaboration.

If results from Advocacy funded research are not accepted for publication within 6 months after the conclusion, it is expected that results, whether positive or negative, will be published in “PLoS Currents: Huntington Disease.” (

Review procedure

All proposals will be assessed by our Scientific Advisory Panel that will call on scientists with expertise in the field of proposal. The panel will consider: significance, technical merit, quality of the applicants´ previous work, relevance of goals of the research, and complementarity with other proposals or ongoing research.


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