EDSA AGA 2020

Because of the Covid-19 situation the EDSA Annual General Assembly (AGA) could not be hold this year as planned in Lugano, Switzerland but instead had to be hold online, 21. November 2020.
42 participants were registered, representing 33 different DS-associations in 27 countries.

Agenda and Elections

Normally the AGA includes two half day meetings and a one day seminar on a specific topic.
First online AGA was organized by zoom platform and the proposed time was two hours. Besides the usual agenda items such as the reports from president and treasurer, elections were to be held. The current Board was elected 2017 in Dublin and was in office until this year. All members received information about the nominated candidates beforehand. The election took place during the AGA.
Dinka Vukovic from the Croatian DS Association was elected to the new EDSA president. Further information about the new board: http://www.edsa.eu/board-2/

European projects and Surveys

Anna Contardi (AIPD, Rom) gave an update about the current status and the network of “Valueable”.
Fulya Ekmen (DS Turkey) presented the project “I learn and get beyond my limits”. EDSA is a partner in both these projects.

Pat Clarke explained the scientific survey “Gene overdosage and comorbidities during the early lifetime in Down Syndrome” (GO-DS21) This survey investigates the genetic mechanism of the comorbidity of obesity and intellectual disability. EDSAs role will be mainly in disseminating the results of this survey.
Information: https://go-ds21.eu

Covid-19 and Down Syndrome

On the agenda were two short presentations about Covid-19 and Down syndrome. The presentation of Prof. em Jacqueline London from AFRT France was called: “How persons with Down Syndrome face Covid in the first pandemic” with results of an international and an AFRT survey on risk factors etc.

Tatyana Nechaeva from the Russian Association Downsideup showed her presentation called “Family support during the pandemic”. As in Russia the DS Association has already a lot of experience in online counselling, they were able to successfully extended their distance family support.

EDSA activities

Further EDSA activities like „Invite an expert“ and the new planned regular webinars were briefly addressed to. Besides social media like Facebook, twitter and Instagram EDSA now also has an own YouTube channel. Activities for the World Down Syndrome Day 2021 should be discussed soon.

Webinar instead of seminar

The seminar topic this year was meant to be “Early Intervention“ and preparations has been well on the way. EDSA member in Lugano,Switzerland the association Progetto Avventuno was in charge of the organization.
Unfortunately we could not have our whole day seminar but at least the pandemic situation gave us the opportunity to think about other possibilities of disseminating knowledge and experience. EDSA decided to offer monthly webinars from now on.
The first presentation already took place on 18th November 2020 and was on the issue “Early Intervention“. We were very happy to find Prof. Sue Buckley (UK) prepared to hold this online seminar.
Information: http://www.edsa.eu/edsa-webinar-with-prof-sue-buckley/