NA News - Issue 14
Welcome to NA News, dedicated to updating researchers, patients and sponsors with the latest news about neuroacanthocytosis (NA) related diseases, a rare group of conditions affecting the brain. NA News is part of our coordinated effort for better information and scientific exchange about these ailments, 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 other forms of brain neurodegeneration. In our fourteenth edition of NA News you will find information on new research projects, an update on our fifth international symposium, plus fundraising and patient news.
Fifth International Symposium sparks fruitful exchanges
On October 1-2, 2010, over 70 scientists gathered in Bethesda, MD, for a unique joint meeting: “Brain, blood and iron: Joint international conference on neuroacanthocytosis and neurodegeneration with brain iron accumulation.” The meeting, which was the Fifth International Symposium on NA, marked the first time that a large group of researchers joined together to share their insights into the causes of neurodegeneration associated with both thorny red blood cells (acanthocytes) and deposits of iron in the basal ganglia.
Back to Bethesda, the birthplace of the Advocacy
This year's symposium found a fitting venue in Bethesda, which was the birthplace of the Advocacy for Neuroacanthocytosis Patients in 2001. It was at that time that Ginger and daughter Alexandra Irvine first met Adrian Danek MD. Alex was examined by Dr. Danek as part of the first coordinated clinical study of a number of patients who were genetically diagnosed with a neuroacanthocytosis syndrome.
Double your support for the Advocacy in Christmas Challenge
Can you help us take advantage of a rare annual opportunity to double the value of donations towards NA research? From December 6th to 10th, the Christmas Challenge at The Big Give means that whatever amount you pledge to the Advocacy online will be matched by our major donors, directors and sponsors.
NA gene bank wins long-term support following new grant
Long-term storage of patient DNA has been made possible following new
grant support received in Munich, a major advantage for current and
future research into NA and other rare movement disorders. In June, Dr.
Benedikt Bader won a grant by the Friedrich Baur Stiftung in Munich for
laboratory material (consumables) needed to extract DNA from all the
blood samples received for Western blot diagnostics since 2005.
Blood samples needed for key EMINA research
An important part of the EMINA research project is being conducted at
the Medical University of Vienna, where researchers led by Dr. Claudia
Roos are looking to test a novel hypothesis about VPS13A, the missing
protein in ChAc patients. But to undertake their work, Dr. Roos's team
needs the help of NA patients and their families in the form of blood
samples. We hope you will help us support this important work.
NA Advocacy at the European Huntington’s Disease Network 6th Plenary Meeting
NA and Huntington’s Disease affect the same part of the brain and
patients struggle with similar movement disorders and other symptoms.
Although much more common than NA, HD is a rare condition and at the
Advocacy we were grateful for the opportunity to learn more about the
science, research approaches and funding policies of the European
Huntington's Disease Network (EHDN) and its American parent organisation
earlier this autumn.
Francesca Roberts joins NA Board of Trustees
We are pleased to welcome Francesca Roberts to the NA Board of Trustees.
Francesca was born in Wales and after a year as an exchange student in
the US she worked for the charity's UK office, coming in contact with
Katie completed her first-ever half marathon from and to the Dome (O2 Centre) in Greenwich near London raising over £750 to our cause. Meanwhile the Parry family organised a sponsored walk, raising more than £3500. Read the full report...
Pamela Korb: Pamela’s family in Erfurt, Germany wrote
to say how valuable she finds physical activity. Ana Maria Paloma Argenta: Ezequiel writes from Madrid
that the family spent a week at Port Aventura enjoying the characters
in the park. Maria Rivera: Sadly we need to report the death on 2 January of this year of NA patient Maria Rivera.
For the latest developments in research relevant to NA read our Research Update.