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Project information

NA - A Key To Understanding Neurodegeneration

Expand neuroacanthocytosis (NA) research to help uncover the causes of devastating diseases such as Parkinson’s, Huntington’s , obsessive-compulsive disorder and schizophrenia. They like NA are degeneration of the basal ganglia in the deep center of the brain that regulates movement and emotions.

One year

Charity information: Advocacy for Neuroacanthocytosis Patients

Advocacy for Neuroacanthocytosis Patients logo
  • Need


    Universities depend on financial support from the wide community. To nurture the research effort we need to interest researchers in the scientific opportunities of NA, encourage them to propose well-documented projects and provide knowledgeable, professional and objective evaluation of the likely contribution of the proposed research projects. Finally, we must find seed money to start chosen projects until they find support from the governments, industry or large foundations.


    Through further research. Advocacy financed research has found characteristics of NA red blood cell membranes that may affect circulation in cells and cause their death. Patients of one NA disease are missing one protein that in yeast is involved in circulation. We found an antibody to trace this protein in healthy cells and are looking closely at the protein in yeast. Artificial brain cells produced from skin now allow us to compare healthy and diseased living brain cells.

  • Aims

    Aim 1

    We will have an international competition for grants to universities totaling £150,000.


    » We will contact researchers around the world with a call for research proposals and independent professionals will evaluate the proposals we receive.

    What success will look like

    Ultimately, success will be measured by the progress toward a therapy, but in the near term the quality and relevance of the grant proposals we receive will indicate progress.

  • Impact


    Extending the understanding of causes of neurodegeneration will be demonstrated through the scientific publications and collaboration of our researchers with others who are determined to stop the human suffering and enormous social cost of neurodegeneration. The rewards for preventing, slowing or stopping neurodegeneration will be huge for patients and immeasurable to the whole of our society for which the blessing of extended physical health is sadly compromised by the disease.


    A grant is awarded to a scientist unable to manage the proposed investigation or is distracted from their original aim. We reduce this risk with an independent, professional scientific review panel that considers each research grant proposal, often with the advice of specialists in a narrow field. For the sake of objectivity, reports and recommendations are anonymous. Grants are made by way of a contract with the investigator’s university in the format used by the Wellcome Trust.


    We regularly report to donors and the whole NA community through our bi-annual newsletter. This is supplemented by personal report to donors sponsoring specific projects.

  • Budget

    Budget - Project Cost: £150,000

    Loading graph....
      Amount Heading Description
      £150,000 Research grants 5 grants of £30,000

    Current Funding / Pledges

    Source Amount
    Exsisting funds £30,000 Guaranteed
  • Background


    Grants applications will be received from scientists around the world and eventually benefit patients on every continent.


    Possibly everyone affected by a neurodegenerative disease. This may include hundreds of millions of people from every corner of the world.

  • Why Us?

    Why Us?

    The Advocacy is the only group dedicated to research into neuroacanthocytosis and the clues to wider neurodegeneration that it offers. We also support patients and medical professionals around the world with a free diagnostic service. Although NA is very rare, patients are spread widely around the world and often have no access to health professionals knowledgeable about the disease.

    Read more about the Charity running this project.


    Ginger And Glenn Irvine

    parents of a patient, are volunteers fully engaged in the work

    Sheila And Ralph Averbuch

    are volunteers who produce the acclaimed e-newsletter

    Louise Dreher

    is the volunteer who maintains contact with German speaking patients.

    Fiona Fleming

    is the volunteer who maintains contact with Spanish-speaking patients.