Scientific Advisory Board Fragile X Monday November 28 th , 2016
Introduction • Round table - intro • Simply using your native language • Feel free to intervene at all time – this is your meeting
Agenda • MoU for research project – final • X’Presse on health: thank you & outstanding topics • Research update • Survey the quality of special education in Federation Wallonie- Bruxelles • Debrief from our Fragile X week-end & conference (Oct 8-9) • Round table and AOB
MoU for Research Projects • Now formally approved by board of Inclusion absl • Will be used for all new research projects
X’Presse – Special ‘health” Subject Author Statut 1 er angle de vue : problèmes de développement Autisme et X fragile Pr Magerotte Published Déficit langagier Pr Majerus Published Expression orale, logopédie Mme Déom Published Psychomotricité Mme de Woot Published 2 e angle de vue : problèmes de santé Problèmes dentaires Pr Olszewski No reply Otites à répétition Dr Storme Published Published Problèmes cardiaques Pr Dembour Visite chez le médecin, dentiste, Mme Delheusy No reply ophtalmologue … ou Mme Theys Pieds plats, orthopédie Dr Reynders No reply Déglutition chez le nourrisson Mme Déom Outstanding Alimentation, non satiété ? No author yet Epilepsie Pr Nassogne Published Médicaments Pr Nassogne Published 3 e angle de vue : perspectives d’avenir Essais cliniques Dr Van Dijck Published 4 e angle de vue : syndromes associés FXTAS Pr Garraux No reply FXPOI Pr Young (Paris) Outstanding
Ongoing Research & Clinical Trial • Ganaxolone (Pr. Kooy) • Premutation (Pr. Verellen-Dumoulin) • Attention/focus (Pr. Majerus) • DVD with research papers from 15th International Fragile X conference (NFXF) • Longitudinal study (MSc. University Geneva) • http://archive-ouverte.unige.ch/unige:88008 • Genetic science (CRISP-CAS-9) • Other research
Survey on special education (FWB) • Initiated by XFB and to be led by Inclusion asbl (not just for FX) • Internet-based, sent to a target group (intellectual disability), anonymous, mostly multiple-choice (easier analysis) • Background questions incl. age, school history • Facts and satisfaction on School, PIA, Bulletin, CPMS, speech therapist & OT support, afterschool-care, lunch, school trips, transport • Child abuse evaluation
Fragile X week-end & conference 8-9 October 2016; Château Cousin; Rochefort
Latest News to share? Round table Next meeting (proposed date): Monday May 29 th , 2017
Thank you! Your personal commitment makes the difference and gives hope to families
Association X fragile Belgique • Website: www.x-fragile.be • Facebook: https://www.facebook.com/AssociationXFragileBelgique • Contact for SAB: François Rycx – francois.rycx@bt.com – 0496 57 35 19
Werkgroep Fragiel X • New website: www.fragiel.be
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