Fourth Annual Meeting CDKL5 Forum

cdkl5 forum 2018

On behalf of the Loulou Foundation and our partners from the Orphan Disease Center at the University of Pennsylvania and the CDKL5 Alliance, it gives us great pleasure to welcome you to the fourth annual meeting of the CDKL5 Forum for the advancement of science and therapeutic approaches.

This year, the Forum returns to London but is being held for the first time at the Francis Crick Institute, a world-class scientific organization dedicated to tackling human disease and whose beautiful building was designed for openness and collaboration, two elements the Forum seeks to promote. We welcome an international scientific community of academics, clinicians, and industry representatives from across four continents sharing their research on CDKL5 Deficiency Disorder, as well as leaders of patient advocacy groups from eight different countries. These remarkable numbers reflect the international reach of the community, and the dedication to work together towards our shared sacred mission, on behalf of all the patients and their families around the world.

With this active and growing community of scientists and advocates engaged in knowledge sharing and collaboration, we aim over the next two days to highlight some of the latest CDKL5 research, while stimulating peer-group discussion and brainstorming around existing and future avenues of promising research and therapeutic approaches to treat the disorder.

As with previous years, the outcomes and conclusions of this meeting will guide and determine the research funding priorities for the Loulou Foundation over the coming year. Since last year and based on the priorities set by previous Forum meetings, the Foundation has awarded seven new CDKL5 Program of Excellence pilot grants. The research program has now already enabled 32 separate research projects at leading academic institutions across the United States and Europe, as well as several ongoing directed research projects and corporate collaborations with industry.

We and all the other affected families around the world are immensely grateful that you have taken the time to join us for this important meeting. We hope you will find it both interesting and stimulating and very much look forward to your continued and active engagement with the Forum community and in the field of CDKL5 Deficiency Disorder, for the benefit of scientific advancements and above all, the patients and their families.

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