Month: November 2021

Spanish CDKL5 CONFERENCE

Posted on by hjk@vadigitalmarketing.co.uk

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FIRST CDKL5 CONFERENCE IN SPANISH

On Saturday the 13th November 2021, the First CDKL5 Conference in Spanish was hosted and organised by CDKL5 Spain.

During the conference, we had participants from the CDKL5 community which were Montserrat Minguell (President of CDKL5 Spain), Antonino Caridi (President of CDKL5 Alliance), MD. PhD Ángel Aledo (Neurologist and Neurophysiologist at the Hospital Ruber Internacional de Madrid), PhD Máximo Ibo Galindo (Researcher at the CIPF and professor at the Universitat Politècnica of València), PhD Victor Puntes (ICN2 and VHIR Researcher and professor at the University of Barcelona) and PhD Ana Mingorance (Loulou Foundation Chief development and scientific advisor to AACDKL5).

During the conference, topics were discussed such as why it is important and useful to be a part of the CDKL5 Alliance, pre-clinical questions such as the search for the CDKL5 phenotype in the Drosophila fly, the clinical relationship between intestinal microbiota and epilepsy and a summary of the FORUM CDKL5 2021 on present and future of CDKL5.

This conference was broadcast via ZOOM and it was attended by families from 13 different countries: Spain, Italy, Norway, France, Portugal, Russia, United Kingdom, Uruguay, Chile, Mexico, Peru, Colombia and the United States of America.

We hope that this event will be included, every year, in the CDKL5 Spain agenda, in order to keep the entire Spanish-speaking community informed.

Link : https://youtu.be/hKZPjBtkTA0

I CONFERENCIA CDKL5 EN ESPAÑOL

El pasado sábado 13 de noviembre, tuvo lugar la I Conferencia CDKL5 en español, organizada por Asociación de Afectados CDKL5.

En esta conferencia contamos con la participación de Montserrat Minguell (Presidenta de CDKL5 España), Antonino Caridi (Presidente de CDKL5 Alliance), MD. PhD.Ángel Aledo (Neurologo y Neurofisiológo del Hospital Ruber Internacional de Madrid), PhD Máximo Ibo Galindo (Investigador del CIPF y profesor de la Universitat Politècnica de Valencia), PhD Victor Puntes (Investigador ICN2 y VHIR y profesor de la Universidad de Barcelona) y PhD Ana Mingorance (Loulou Foundation Chief development y asesora científica de AACDKL5).

Se trataron temas como la utilidad y la importancia de pertenecer a la CDKL5 Alliance, cuestiones pre-clínicas como la búsqueda del fenotipo de CDKL5 en la mosca Drosophila, relación clínica entre microbiota intestinal y epilepsia y un resumen del FORUM CDKL5 2021 sobre la actualidad y el futuro de CDKL5.

Esta conferencia fue emitida en directo vía ZOOM a la que se unieron familias de 13 países diferentes: España, Italia, Noruega, Francia, Portugal, Rusia, Reino Unido, Uruguay, Chile, México, Perú, Colombia y los Estados Unidos de América.

Esperamos que este evento se instaure de forma anual en la agenda de la Asociación de Afectados CDKL5, con la finalidad de mantener informada a toda la comunidad hispanohablante.

 

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MAIN LESSONS FROM THE 2021 CDKL5 FORUM

Posted on by hjk@vadigitalmarketing.co.uk

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For the past seven years, the Loulou Foundation has hosted an annual meeting, the CDKL5 Forum, where scientists and drug developers working on CDKL5 Deficiency Disorder (CDD), together with representatives from patient organizations, meet to discuss the latest advances in the field. You can find written summaries from the past three meetings here: 2018, 2019 and 2020.

The 2021 CDKL5 Forum edition took place November 1-2, and for the second year, due to the ongoing pandemic, it was held fully on-line. The Loulou Foundation turned this into an opportunity to also host a series of workshops prior to the 2-day conference, turning the Forum into a giant Think Tank. This made this year’s Forum quite unique, and I hope the pre-conference workshops are here to stay.

I know that many in the CDD patient community are waiting for this written summary, so I will try to extract the main conclusions from the Forum with this audience in mind. But I want to start with a warning: if you are reading this summary mainly looking for an answer to “when are the gene therapy trials for CDD starting?”, the best answer that we have today is “we don’t know yet”. I understand this might feel disappointing to some, as if we are not progressing fast enough, and potentially make you feel a bit hopeless. That’s only human, so I want to acknowledge that upfront.

In the next paragraphs I will walk you through the magnitude of the effort and the tangible progress that has taken place around research and treatments for CDD, and that was presented at the Forum. I invite you to read it in the spirit of celebrating each step and each progress and small victory along the way, because we have come a very long way, and this year the progress in biology understanding and therapy development has been particularly significant.

It is remarkable how far we’ve come in the last few years, and the size and commitment of the community of scientists and companies that has grown around CDD.

Because of that, I have structured the summary of this year’s Forum around the following themes: hope, tangible progresses, strategy and partnerships.

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