Welcome to NA News issue 16
New developments in NA research, insights on how drugs are developed for rare diseases, interim reports from our European-sponsored EMINA project -- all this and more features in this issue of NA News. If you're new to us, we're dedicated to updating researchers, patients and sponsors with the latest news about neuroacanthocytosis, a rare condition that bears similarities to and may shed light on other neurodegenerative disorders, including Alzheimer's, Huntington's and Parkinson's. In this issue we announce an important new phase for the research we fund with our 2011 Call for Proposals: for the first time we're seeking grant applications from all pertinent investigators exploring the basal ganglia. Let us know what you think of any article: just click below each story to comment. You can now find us on Facebook.
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What do spiky red blood cells have to do with neurodegeneration?
After 10 years, NA researchers have refined their working hypothesis on acanthocytosis in NA patients. Using insights gained at the London/Oxford symposium in 2008, the hypothesis has been refined to: “The anomalies in the red blood cells causing acanthocytosis relate to a malfunction in the membrane that in neurons may hamper normal autophagy and lead to cell death.”
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Orphan diseases aren't forgotten: a roadmap for rare diseases with EURORDIS
This summer marked a new first for the Advocacy, as we successfully competed to take part in an intensive course which helps groups like ours understand how drugs are developed and approved for rare diseases.
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Ten ways you can act now to bring a cure for NA closer
We had a great reaction to this advice article last issue, so we're repeating it. You'll find practical tips for what you and your family can do right now to fight NA diseases if you're diagnosed. Although we're still learning about the disease and potential therapies, there's action you can take now to help us fight this thing: and you can start today.
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Can you help us communicate with NA patients in Asia?
Our three advocates allow the Advocacy to correspond with patients and families who speak French, German and Spanish, and now we're seeking help from others who can help us communicate with those in Japan, Pakistan, China and India.
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Blood samples urgently required for NA research in Vienna
NA patients willing to donate blood samples can make an invaluable contribution to the Vienna-based team investigating a novel hypothesis about chorein, the missing protein in ChAc patients.
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NA research call broadens to wider basal ganglia community
The Advocacy has just made its call for NA Research Grant Proposals 2011, and the current call marks the first time the scope has been extended to include the wider basal ganglia community – including recognised investigators in Huntington's and Parkinson's diseases.
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Projects receive new NA funding
This October two new grants were made in the ongoing quest to understand the causes of NA: from Pauline Williford, mother of a McLeod’s syndrome patient, and from the Advocacy.
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PATIENT FOCUS
Updates from Pamela Korb in Germany… Kim Sonnet in Australia ...Alex Irvine and David Nicholson in the UK...
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In memoriam
Ann Lippincott, mother of the late Marika Ann Critelli, contributes a poignant poem in this issue, and we also report news of a bequest gratefully received from the family of the late Gordon Abernethy.
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RESEARCH UPDATE
Read the interim report of the European Multidisciplinary Initiative on Neuroacanthocytosis projects, as well as progress reports from NA researchers in the University of Michigan and at the Technical University of Dresden.
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FUNDRAISING UPDATE
Again this year you have the chance to double your support for the Advocacy through the BigGive Christmas Challenge. Pledges of £12,000 to match donations are already committed by our own supporters, the Reed Foundation and Candis magazine.
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