Η Κική Δημουλά πιστεύει στο θαύμα του Θοδωρή. Γιατί οι ποιητές προηγούνται όλων των επιστημών στα μελλούμενα να συμβούν, όπως έλεγε...
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News
Το θαύμα του Θοδωρή – Αγωνίζεται μαζί με την οικογένειά του να νικήσει τη νόσο Batten
/ December 25, 2018
ΝΕΑ ΥΟΡΚΗ - ΕΘΝΙΚΟΣ ΚΗΡΥΞ. Πόσο εύκολο είναι να αντέξεις, όταν μαθαίνεις ότι το παιδί σου πάσχει από μία ανίατη...
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«Τα Μάτια της Χριστίνας»
/ December 25, 2018
Τη γνώρισα, δεν θυμάμαι πόσα χρόνια πριν, σ ένα εστιατόριο με τον άντρα της. Μέσα στα καταγάλανα μάτια μιας σταρ...
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Η νόσος Μπάτεν και το θαύμα του Θοδωρή ως παράδειγμα για όλους μας
/ December 16, 2018
Ο Θοδωρής Ντούμας είναι σήμερα 23 ετών ενώ στα έξι του χρόνια διαγνώστηκε με τη θανατηφόρα νόσο Μπάτεν. Κόντρα στις...
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Rare Without Borders: Interview with a Greek Family Battling Batten Disease
/ March 10, 2018
Rare Disease Report had the privilege of interviewing one of our followers, Christina Bouraimi living in Greece, about her son’s...
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Theodore’s Brother, Vasilis, and Nick Maroulis, discuss, with Janet Demeter, on Childhood Cancer Talk Radio
/ March 2, 2018
Nurse and family confidante Nick Maroulis, and brother of Theodore Vasilis Ntoumas join us to discuss Batten disease and the...
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Face to face: A Fairy-tale
/ January 14, 2018
Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that some pictures...
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- BDSRA Hires New Executive Director April 16, 2019Dear BDSRA Community, It is my pleasure to announce that Tauna Batiste will be joining our BDSRA team as Executive Director on May 20, 2019. Tauna is a skilled nonprofit professional who has been committed to community service from an early age. She joins the BDSRA with over 20 years of professional experience in nonprofit […]tkirby
- BDSRA Board of Directors November 20, 2018Brock Benroth is a small business owner, and the married father to two daughters: Kate, who had CLN2 and is a Batten angel and her older sister Lauren, who is a carrier. He has joined the board because through his family’s journey with Kate, her participation in a clinical trial, his experience as the Ohio […]tkirby
- BDSRA Executive Director October 18, 2018BDSRA is currently accepting applications for the position of Executive Director. Founded in 1987, our long-term vision is a world without Batten disease. Our mission is to support Batten families, fund and facilitate research for treatment and a cure, and advocate for action. Please click here for more information and to apply. (Read More) The […]tkirby