last issue's announcement of a new Centre of Excellence for NA
Syndromes in Brazil, Adrian
Danek, Benedikt Bader and Gertrud Kwiatkowski from Ludwig
Munich spent a week in Brazil in October 2009, meeting with leading
neurologists at the University
of Sao Paulo.
|From left to right: Dr. Benedikt Bader, Prof. Adrian Danek, Dr. Guilherme Riccioppo
the Ribeirao Preto
campus they met with Professors Vitor Tumas, Lewis Greene and Dr. Guilherme
Riccioppo to plan collaboration in research into neuroacanthocytosis. Patient
data from chorea-acanthocytosis diagnostic tests planned for Lewis Greene's
laboratory will be available to EMINA project researchers in an anonymous form.
the visit Adrian Danek and Benedikt Bader also lectured to the Neurological
Clinic staff on the research into the neuroacanthocytosis syndromes. Dr. Renata
Leite responded with an introduction to the methods of the GeroLabs and the Sao
Paulo Brain Bank. GeroLab has a unique brain tissue collection
and exchange of samples with the Center for Neuropathology and Prion Research
in Munich may
enrich the quality of research into neurodegeneration in general.
They also met Dr. Eduardo Alho who will soon join a team in Würzburg, Germany,
to develop an atlas of the basal ganglia, the section of the brain that is
affected by neuroacanthocytosis as well as Huntington’s and Parkinson’s disease.
Do you know
Spanish-speaking NA patients?
Fiona Fleming, recently announced as the NA Advocacy's
Patients' Advocate for Spanish speakers, has made new contacts in Argentina
following a trip to visit family in the region early this year. During her
visit she was happy to speak with Carlos, father of NA patient Alejandra in La Plata, on the East
Coast of Argentina. "It was lovely to hear his voice," Fiona says.
"Somehow that contact made the NA support group seem so much closer and
Fiona's son, who is a doctor in Mendoza, also arranged contact with Dra LLera
at the Geiser Foundation for Rare Diseases at the Hospital Notti. It is hoped
that Dra Llera will become part of the NA reference network in the future.
The NA Advocacy now has Spanish-speaking contacts in Puerto Rico, Argentina
If you or someone you know could benefit from Fiona's help, please don't
hesitate to send her an email at firstname.lastname@example.org
Advocacy's patient advocates for French (Anne
and German (Louise Dreher, HeDreher@aol.com)
speaking patients are also available to offer assistance.