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.
|Alexander Storch and Glenn Irvine|
|Alex Irvine and Adrian Danek|
|Antonio Velayos and Lucia De Francheschi|
|Benedikt Bader, Adrian Danek and Susan Hayflick|
|Dedicated supporters Carl and Betty Pforzheimer with Benedikt Bader|
|Doda Rudnicki, Claudia Roos, Benedikt Bader and Ruth Walker |
|Lucia De Francheschi and Ranier Prohaska|
|Mithu De explaining her poster to Mohan Narla|
|Patty Wood and Ruth Walker|
|Tobias Haak, Benedikt Bader and Alexander Storch|
Dr. Danek went on to organise the first international symposium on NA, which took place in May 2002, and financial support for this symposium and the subsequent book, “Neuroacanthocytosis Syndromes” were the first activities of the Advocacy.
Today we are proud of what has been achieved in the 9 years of the NA Advocacy, a highly focussed and international organisation recognised for our work in helping and informing patients, clinicians and researchers. We are committed to helping fund the work of researchers -- whose work has also now attracted major European funding – as they deepen their understanding of the basic science of NA and work towards the long-term development of therapies which could slow or halt the progress of NA diseases.
The 2010 joint conference was supported by three departments of the US Government’s National Institutes of Health, the Movement Disorder Society, GlaxoSmithKline and the patient groups – Advocacy for Neuroacanthocytosis Patients, the NBIA Association (USA), Hoffnungsbaum e.V. (Germany) and Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (Italy).