Welcome
Welcome to NA News,
dedicated to
updating researchers, patients and sponsors with the latest
news about neuroacanthocytosis (NA) related diseases, a rare group of
diseases
affecting the brain. NA News is part of our coordinated effort for
better
information and scientific exchange about these conditions, which, while
rare,
bear similarities to and can shed light on common neurodegenerative
disorders
such as Alzheimer's, Huntington's and Parkinson's diseases, and
neurodegeneration with brain iron accumulation (NBIA). In this issue we announce major new EU funding, details of our fifth symposium, and the latest research news, plus the sad news of the loss of NA patient Marika Critelli in California. Thank you for reading.
Brain cell death in focus at Fifth International Symposium
The complete programme has been announced for the fifth international symposium on Neuroacanthocytosis.
Scheduled for 1-2 October 2010, this year's meeting is the Joint
International
Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron
Accumulation.
Read more»
EMINA: neuroacanthocytosis research wins major European funding
The
importance and value of research into NA group diseases has been
recognised by
the first major funding award from Europe:
grants
totalling €650,000 over three years, awarded by the European Union
initiative
E-RARE.
Read more»
Can you point the way to new seed funding?
The
NA Advocacy has launched a new search for seed funding to support two
extremely
promising research proposals. Any readers who may have contacts in
private
foundations or charitable trusts are encouraged to contact the
Advocacy
so that we may help kick-start these projects.
Read more»
NA in Latin America: Argentina and Brazil
Following
last issue's announcement of a new Centre of
Excellence for NA
Syndromes in Brazil,
Adrian
Danek, Benedikt Bader and Gertrud Kwiatkowski from Ludwig
Maximilians University,
Munich spent a week in Brazil in October 2009, meeting with
leading
neurologists at the University
of Sao Paulo.
Read more»
NA Advocacy is now a registered charity
The
NA Advocacy has now been incorporated and registered by the Charity
Commission
of England and Wales. This is
a development which is set to offer added benefits in our
efforts to raise much needed funds to further understanding of this disorder.
Read more»
Rare Disease Day highlights need for research
February's
Rare Disease Day gave the NA Advocacy an opportunity to attend a special
reception in the Scottish Parliament designed to raise awareness among
decision-makers of the need for systematic, properly funded research
into rare
conditions.
Read more»
Patient Focus
Very sadly we report the death of NA patient Marika Ann Critelli of Santa
Barbara, California, who passed away in November. Her mother Ann writes about Marika in this issue. Plus: Susan Hills of England writes about the value of keeping active, and researchers seek reports of any patients who have experienced Deep Brain Stimulation.
Read more»
Research Update
Akira Sano, M.D., PhD, Professor in Psychiatry, Kagoshima
University updates us on research in Japan. Plus publications from Dr Rainer Scheid of the Max Planck Institute for Human Cognitive and Brain Sciences, Leipzig, Germany; Pedro J. Garcia Ruiz, MD Department of Neurology, Fundacion Jimenez Diaz, Universidad Autonoma and CIBERNED, Madrid, Spain and Benedikt Bader, M.D. Neurologische Klinik und Poliklinik, Ludwig-Maximilians-Universitat, Munchen, Germany.
Read more»
Fundraising
Gill and Gordon Parry, our long term supporters and parents of two sons
who succumbed to NA have organised another sponsored walk in aid of NA.
On May
15 over 60 people joined the group in North Wales.
Read more»
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