Date: November, 4th 2014




The international NBIA umbrella patient organization NBIA Alliance announces the award recipients of the travel grants to participate in the 3rd Joint Symposium on Neuroacanthocytosis (NA) and Neurodegeneration with Brain Iron Accumulation (NBIA), held in Stresa, Italy, from October 30th to November 1st, 2014. The awardees were:

Dr. Stephen P. Zano from St. Jude Children’s Research Hospital in Memphis, USA, for “Correction of Coenzyme A Deficiency using RE024 Phosphopantothenate Prodrug”

Dr. Sarah Wiethoff from the Institute of Neurology at University College London, for “Next-Generation Sequencing in NBIA Disorders” and

Dr. Claudia Saraceno from the University of Brescia, Molecular & Translational Medicine, Italy, for “Expression and Functional Analysis of the Zebrafish Pank2 Gene: A Possible Approach for the Study of PKAN, a Human Neurodegenerative Disorder with Brain Iron Accumulation”.

NBIA Alliance Travel Grant Awards
f.l.t.r.: Patricia Wood (NBIA Disorders Association, USA), Dr. Sarah Wiethoff (University College London), Dr. Stephen P. Zano (St. Jude Children's Research Hospital, USA), Dr. Claudia Saraceno (University Brescia, Italy), Angelika Klucken (Hoffnungsbaum e.V., Germany)

All three awardees are postdoctoral fellows proposing innovative approaches to study PKAN and NBIA disorders. The awarding of travel grants by the NBIA Alliance had the concerted aim of involving such researchers at the beginning of their scientific career in the field of NBIA by supporting their participation in the 3rd Joint NA/NBIA Symposium.

The NA and NBIA Symposium was dedicated to topics such as treatment strategies, clinical studies, new genes or pathophysiology and brought together about 130 participants from all over the world including basic and clinical researchers, early career scientists as well as patient organizations involved in the field of NBIA. NBIA is an acronym for Neurodegeneration with Brain Iron Accumulation. It comprises about 10 genetic diseases with abnormal iron storage in the basal ganglia and progressive movement disorders. The most common NBIA form is PKAN.

The informal NBIA Alliance was set up in January 2012 in conjunction with the launch of the EU-funded TIRCON (Treat Iron-Related Childhood Onset Neurodegeneration) project. The member groups from France, Germany, Italy, Netherlands, Spain, UK and the United States are working together on a strategic plan for the future that will be endorsed by all and implemented together.

Contact details of the U.S. NBIA patient organization and NBIA Alliance member:

NBIA Disorders Association
Patricia Wood
Phone: 1 619 588-2315


3rd NA/NBIA Symposium:
NBIA Alliance: