AIRETT Congress – 1st and 2nd June 2019

AIRett devoted the first two days of June to its periodical National Congress organized this year in Cervia – “New Borders in Rett Syndrome: a Glance towards the Future” – with novel therapeutic international strategies being the main theme of the Conference.

Rett families as well as experts interested in the syndrome (more than 250 attendees) had the chance to meet together following, with great interest, presentations by scientists working not only in Italy, but even by foreign ones.

Dr. Cobb talked on his research in Edinburgh, one of the labs working in gene therapy; dr. Lieberman from Boston Children Hospital gave an overview of different current trials of Rett patients, also confirming that FDA is still working on the approval of the gene trial in girls; dr. Ponsot from Hospital Enfants Malades in Paris gave a practical solution of scoliosis surgery by a new low-invasive technique; dr. Renieri from Siena reported on the gene editing strategy in MeCP2, CDKL5 and FOXG1.

There was the presentation of the projects financially supported by AIRett after its International 2018 call: human neuronal derivates for in vitro protein replacement by dr. Steinkellner from Wien; pharmacological reactivation of MeCP2 by dr. Vacca from Naples; therapeutical potential of neutosteroids for CDKL5 disorder by dr. Kilstrup-Nielsen from Varese, pupil size as a biomarker by dr. Pizzorusso from Florence.

Moreover, pain and sleep disorders, as well as breathing disorders (with prof. Leonard skype-connected) have been treated.

The new AIRett Centre  – Research and Innovation of Verona has been exhaustively presented with all its potentials: development and  implementation of rehabilitation technologies with a work on a tele  rehabilitation method in order to give supervisions and monitoring all families who require it , thus overcoming geographical distances; multidisciplinary evaluation of cognitive, communication and motor abilities and social competence by updated and innovative instruments, specific for Rett syndrome; drawing up of individual education projects. The AIRett team (physical and speech therapists, researchers, engineers, computer scientists) will work in collaboration with Universities in order to give practical solutions to families, psychological support and caregivers education.

And, last but not least, during the Congress, families had the opportunity of different consultancy services for their daughters like clinical passport or speech therapy and the chance of testing new technological auxilia.

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