Grants and Awards


Prof. John Rouse
MRC Protein Phosphorylation Unit
University of Dundee
“Identification of substrates, modes of regulation and cellular roles of the CDKL5 kinase” (2016-2018)

Prof. Peter Kind
Patrick Wild Centre
University of Edinburgh
“Understanding and rescuing core deficits underlying CDKL5” (2016-2018)
Disorder related phenotyping of CDKL5 knock out mice & rats and
Molecular and cellular phenotyping and rescue

Dr. Zhaolan (Joe) Zhou
University of Pennsylvania
“Genetic Dissection for CDKL5 Function in Mice” (2016-2017)
(Co-funded by Loulou Foundation 78.3% and IFCR 21.7%)

CDKL5 Pilot Grant Programme Awardees 2018

Nicola Allen, PhD
Salk Institute for Biological Sciences
"Systems Level Analysis of CDKL5 Astrocytes to Identify Novel Markers and Pathways in CDKL5 Deficiency Disorder (CDD)"

Alessia DiNardo, PhD
Boston Children’s Hospital
"High Content Screen to identify drug targets for the neuronal manifestations of CDKL5 deficiency"

James Eubanks, PhD
University of Toronto
"Evaluating a Novel Strategy to Stimulate mTORC1 in Two Mouse Models of CDKL5 Deficiency Disorder"

Michela Fagiolini, PhD
Boston Children’s Hospital
"Testing functional and structural connectivity in CDKL5 deficiency disorder as novel biomarkers"

Michael Greenberg, PhD
Harvard Medical School
"Single-cell Transcriptional Profiling of Mosaic CDKL5 Deficiency Disorder Brain Tissue"

David Liu, PhD
Broad Institute and Harvard University
"Development of Targeted Frameshifting Technologies"

Ihn Sik Seong, PhD
Massachusetts General Hospital
"Quantitative SRM assays for optimization of CDKL5 protein replacement therapy"

CDKL5 Pilot Grant Programme Awardees 2017

Timothy Benke, MD, PhD
University of Colorado
"Mechanisms and treatment of paradoxical hyperexcitability in CDKL5 Deficiency Syndrome"

Elisabetta Ciani, PhD
University of Bologna
"Innovative Strategy to Enhance the Efficiency of Gene Therapy for CDKL5 Disorder"

Vera Kalscheuer, PhD
Max Planck Institute for Molecular Genetics
"Novel CDKL5 complex partners and kinase substrate candidates"

Charlotte Kilstrup-Nielsen, PhD
University of Insurbia
"Therapeutic potential of pregnenolone and its synthetic non-metabolized derivative for CDKL5 disorder"

Alysson Muotri, PhD
University of California San Diego
"CDKL5 Syndrome cortical organoids for drug testing and reversibility potential"

Tommaso Pizzorusso, PhD
Institute of Neuroscience, CNR
"Rescuing CDKL5 mice phenotype by targeting developmental critical period mechanisms"

David Rowitch, MD, PhD
University of Cambridge
"Understanding CDKL5 Expression Pattern by RNAScope in Developing Mouse and Human Glia"

W Andy Tao, PhD
Purdue University
"Identification of CDKL5 direct substrates based on kinase assay linked phosphoproteomics"

Sila Ultanir, PhD
The Francis Crick Institute
"Development of biomarkers for CDKL5 activity"

Robert Wilson, MD, PhD
University of Pennsylvania and the Children's Hospital of Philadelphia
"Therapeutic drug discovery for CDKL5 deficiency using random shRNA selection"

CDKL5 Program of Excellence 2016 Pilot Grant Awardees

Bianca De Filippis, PhD
Instituto Superiore di Sanità
“Brain Rho GTPases: in search of innovative therapeutic targets for CDKL5 deficiency”

Michael Green, MD, PhD
University of Massachusetts Medical School
“Pharmacological Reactivation of the Xi-Linked CDKL5 Gene as a Potential Treatment for CDKL5 Deficiency”

Frances Jensen, MD, FACP
University of Pennsylvania
“Targeting the chloride-importing and exporting transporters in CDKL5 disorder”

Robin Kleiman, PhD
Boston Children’s Hospital
Michael Johnson, MD, PhD
Imperial College London
“Development of a High-content drug repurposing screen using CDKL5 patient derived iPSC neurons”

Charlotte Kilstrup-Nielsen, PhD
University of Insubria
“Predictive Drug Repurposing for CDKL5 Syndrome”

Nicoletta Landsberger, PhD
University of Milan
“Exploiting computational biology for target identification and drug repositioning in CDKL5 disorder”

Jeannie Lee, MD, PhD
Massachusetts General Hospital
“Treating CDKL5 Syndrome by reactivating  the silent allele of CDKL5”

Jan Nolta, PhD
University of California, Davis Medical Center
“Development of TALE and CRISPR/Cas9 as a putative therapy for treatment or correction of genetically linked CDKL5 Deficiency”

Roy Perlis, MD, MSC
Massachusetts General Hospital
"Precision Medicine Program for CDKL5 Disorders: Therapeutic Screening Using Human iPSC Models”

Jianrong Tang, PhD
Baylor College of Medicine
“Studies of forniceal deep brain stimulation and hippocampal memory in CDKL5 mice”

Zhaolan Zhou, PhD
University of Pennsylvania
“Identifying a Neural Circuit Readout for CDKL5 Disorder”




  1. CDKL5 Forum Award for Excellence – Lab of the Year 2017 – Zhou Lab
  2. CDKL5 Forum Award for Excellence – Company Making a Difference 2017 Preclinical – Amicus Therapeutics
  3. CDKL5 Forum Award for Excellence – Company Making a Difference 2017 Clinical – Marinus
  4. CDKL5 Forum Award for Excellence – Champion of Progress – the Howard Family

CDKL5 Forum Junior Fellowships Award

  • Lucas Baltussen – Francis Crick Institute
  • Claudia Fuchs – University of Bologna
  • Ralph Hector – Glasgow University
  • Ivan Munoz – University of Dundee
  • Laura Rusconi – University of Insubria


  1. CDKL5 Forum Award for Excellence – Lab of the Year 2016 – Devinsky Clinic, NYU
  2. CDKL5 Forum Award for Excellence – Company Making a Difference 2016 – PTC Therapeutics
  3. CDKL5 Forum Award for Excellence – Outstanding Contribution - Michael Jasulavic


CDKL5 Forum Award for Excellence – Lab of the Year 2015 – Ciani Lab, University of Bologna