Loulou Foundation

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Loulou Foundation is a private non-profit UK foundation dedicated to advancing research into the understanding and development of therapeutics for CDKL5 deficiency disorder.

Viralgen, a leading contract development and manufacturing organization (CDMO) specializing in recombinant adeno-associa...
06/05/2026

Viralgen, a leading contract development and manufacturing organization (CDMO) specializing in recombinant adeno-associated virus (rAAV) gene therapies, announced today a partnership with Elaaj Bio, a biotechnology company focused on development of transformative treatments for CDKL5 Deficiency Disorder (CDD). Elaaj Bio is a wholly owned subsidiary of the Loulou Foundation, a private non-profit foundation dedicated to the development and research of therapeutics for CDD. The collaboration, to advance an investigational CDKL5 gene therapy, brings together complementary expertise across development and manufacturing services for adeno-associated virus (AAV) vectors to support advancement of the program toward clinical development.

Read More: https://pressreleasehub.pa.media/article/viralgen-partners-with-elaaj-bio-to-advance-gene-therapy-program-for-cdkl5-deciency-disorder-72691.html

Majid Jafar, Co-Founder of the Loulou Foundation, discusses the strategic evolution of the patient research organisation...
05/05/2026

Majid Jafar, Co-Founder of the Loulou Foundation, discusses the strategic evolution of the patient research organisation that he co-founded with his wife following their daughter Alia’s diagnosis with CDKL5 Deficiency Disorder (CDD). By moving beyond traditional advocacy into "philanthropharma", Jafar has spearheaded the development of a global translational toolkit, contributing to the first FDA-approved treatment for the condition and gene therapies in the pipeline. He shares insights on the power of industry partnerships, the "people of determination" ecosystem in the UAE, and the impending shift from symptomatic treatment to genetic cures.

Read More: https://pharmaboardroom.com/interviews/majid-jafar-co-founder-loulou-foundation/

The Loulou Foundation is pleased to announce the four Awardees of the 2025 CDKL5 Pilot Grant Program.  Now in its tenth ...
01/05/2025

The Loulou Foundation is pleased to announce the four Awardees of the 2025 CDKL5 Pilot Grant Program. Now in its tenth year, the CDKL5 Pilot Grant Program is directed and funded by the Loulou Foundation through its establishment of the CDKL5 Program of Excellence at the Orphan Disease Center of the University of Pennsylvania Perelman School of Medicine.
The goal of the Program is to advance basic and therapeutic research on CDKL5 Deficiency Disorder (CDD), a rare neurodevelopmental disorder affecting thousands of patients across the world. Again this year, the one-year research proposals submitted by these Pilot Grant Awardees cover a range of topics, from the basic biology of CDKL5 to translational and clinical development of therapeutics for CDD. All have gone through a thorough process of multiple peer reviews by the leading experts in the field.
We thank all applicants to this year’s grant program for providing a large number of high quality and competitive pool of research proposals, and thank as well the many scientists who served as peer reviewers for this year’s grant cycle, giving generously of their time and expertise to carefully evaluate and score all invited applications.

CDKL5 Pilot Grant Program Awardees 2025:

James Eubanks, PhD
University Health Network – Krembil Research Institute, Canada
“Preclinical Investigations Of Proteasome and Lysosome Inhibitors In CDKL5 Deficient Mice”

Maurizio Giustetto, PhD
University of Torino, Italy
“Exploiting microRNAs to disclose novel pathophysiological mechanisms, biomarkers and therapeutic approaches for CDKL5 deficiency disorder”

Jedd Hubbs, PhD
Boston Children’s Hospital, USA
“Development of a tau hyperphosphorylation assay in CDKL5 deficiency disorder iPSC-derived neurons”

Josephine Thinwa, PhD
UT Southwestern Medical Center, USA
“Regulation of CDKL5 Function by Type I Interferons”

Congratulations again to the 2025 CDKL5 Pilot Grant awardees; we are grateful for the important contributions that they and the other dedicated scientists in the CDKL5 community will make to advancing therapeutic development for CDD. We also look forward to learning more about these and other exciting advances at the CDKL5 Forum in Boston, MA, on October 27-28, 2025.

The Loulou Foundation is pleased to announce the five Awardees of the 2024 CDKL5 Pilot Grant Programme. Now in its ninth...
01/05/2024

The Loulou Foundation is pleased to announce the five Awardees of the 2024 CDKL5 Pilot Grant Programme. Now in its ninth year, the CDKL5 Pilot Grant Programme is directed by the Loulou Foundation through its collaboration with the CDKL5 Program of Excellence at the Orphan Disease Center of the University of Pennsylvania Perelman School of Medicine.

The goal of the Programme is to advance basic and therapeutic research on CDKL5 Deficiency Disorder, a rare neurodevelopmental disorder affecting thousands of patients across the world. Again this year, the one-year research proposals submitted by these Pilot Grant Awardees cover a range of topics, from the basic biology of CDKL5 to translational and clinical development of therapeutics for CDKL5 Deficiency Disorder.

We thank all applicants to this year’s grant program for providing a high quality and competitive pool of research projects, and thank as well the many scientists who served as peer reviewers for this year’s grant cycle, giving generously of their time and expertise to carefully evaluate all invited applications.

CDKL5 Pilot Grant Programme Awardees 2024:

Roy Ben-Shalom, PhD
University of California, Davis, USA
“Integrating Experimental and Computational Approaches to Unravel the Neurophysiological Basis of CDKL5 Deficiency Disorder”

Ario de Marco, PhD
University of Nova Gorica, SLOVENIA
Maria Luisa Tutino, PhD (Co-PI)
University of Naples/INBB, ITALY
“Looking for differences: in vitro isolation of hCDKL5-specific antibody fragments and set-up of a method to quantify hCDKL5 and possibly distinguish between its isoforms.”

Jacque Pak Kan Ip, PhD
The Chinese University of Hong Kong, CHINA
“Cortical Visual Impairment in CDKL5 Deficiency: Dissecting the Link between Functional Deficits and Molecular Mechanisms”

Keren Lasker, PhD
The Scripps Research Institute, USA
“CDKL5 in Biomolecular Condensates and its Role in CDD Pathophysiology”

W. Andy Tao, PhD
Purdue University, USA
“Profiling CDKL5 signaling landscape at the synapses”

Congratulations again to the 2024 CDKL5 Pilot Grant awardees; we are grateful for the important contributions that they and the other dedicated scientists in the CDKL5 community will make to advancing therapeutic development for CDD. We also look forward to learning more about these and other exciting advances at the CDKL5 Forum in Boston, MA, on Oct 28-29, 2024.

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