Sevathon for CDKL5

Sevathon for CDKL5

It’s been a while since we met you all! And what a better way than a Sunday morning spent at the Lake Vasona park, where you can either run, dance, do yoga, tie & dye shirts, or just say stop by to say hello. Looking forward to seeing you all there ❤

333 Blossom Hill Rd, Los Gatos, CA 95032, USA

CDKL5 International Family Conference

Click here for more details on CDKL5 Canada’s website

CDKL5 South Asia – Meet and Greet


[vc_row][vc_column][vc_custom_heading text=”MAIN LESSONS FROM THE 2021 CDKL5 FORUM” font_container=”tag:h1|text_align:left” use_theme_fonts=”yes” css=”.vc_custom_1636390226443{padding-top: 15px !important;padding-bottom: 15px !important;}”][vc_column_text]

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.

Please use the following link to read more….[/vc_column_text][/vc_column][/vc_row]

CDKL5 International family conference

[vc_row][vc_column width=”1/2″][vc_single_image image=”799″ img_size=”large”][/vc_column][vc_column width=”1/2″][vc_custom_heading text=”CDKL5 Alliance International Virtual Family Conference” use_theme_fonts=”yes”][vc_column_text]The CDKL5 Alliance is pleased to present this year’s International Virtual Family Conference on Saturday, June 19th, 2021. The conference will be ‘a la carte’, meaning you will be able to visit the website on the 19th or afterwards and view pre-recorded presentations from the speakers outlined in the agenda below. You can watch any or all of the presentations in any order you like and will have the luxury of re-visiting the presentations in the future.

All presentations will be in English with subtitles available in Spanish, Italian, French, German, Russian and Japanese. You will have the opportunity to submit questions after watching these presentations on the 19th and answers will be posted within 2-3 weeks on the Alliance website.[/vc_column_text][/vc_column][/vc_row]

September 18-19, 2019: CDKL5 ASIA Workshop 2019

~For the advancement of understanding and Treating CDKL5 Deficiency Disorder~
IRCN will hold two-day workshop which is organized in partnership with Loulou Foundation, and represents the first event on CDKL5 Deficiency Disorder (CDD) in Japan.
Our overarching goal will be to reach out to CDD patient families and engage the scientific community in new partnerships and knowledge exchange about existing and future pre-clinical and clinical research, as well as promising therapeutic approaches.
We look forward to welcoming families, leading scientists, clinicians and pharmaceutical companies from Japan and around the world and providing opportunities for presentations and active discussion.

Date: September 18-19, 2019

Venue: Ito International Research Center, Hongo Campus (Access:

Vera Kalscheuer (Max Planck Institute for Molecular Genetics)
Tim Benke (University of Colorado)
Carol-Anne Partridge (CDKL5 U.K.)
Saori Tanaka (CDKL5 Japan)
Helen Leonard (University of Western Australia)
Teruyuki Tanaka (The University of Tokyo)
Wenlin Liao (National Chengchi University)
Liqin Cao (IIIS, Tsukuba University)
Hisashi Umemori (Boston Children’s Hospital)
Priscilla Negraes (University of California, San Diego/StemoniX)
Syouichi Katayama (Ritsumeikan University)
Alessandro Gozzi (Istituto Italiano de Tecnologia)
Tommaso Pizzorusso (University of Florence)
Michela Fagiolini (Boston Children’s Hospital)
Timothy Roberts (University of Pennsylvania)
Takao Hensch (IRCN/Harvard University)

Mail to:CDKL5 Administration Office (

Please fill out the Registration Form
(Registration Deadline: September 10, 15:00 JST)

Admission Fee: Free

For more information (Programs), please see HERE.


Fourth Annual Meeting CDKL5 Forum

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.

For more details visit:

CDKL5 Alliance Edinburgh

The CDKL5 Alliance are proud to present their first International Research and Family Conference which will be held on the 22-23rd June 2019 at the Royal College of Surgeons in Edinburgh. This event is organised by CDKL5 UK in association with the CDKL5 Alliance members.

Details to follow.