The Jerome Lejeune foundation was founded in 1995 in order to pursue the work of Jerome Lejeune, medical doctor and researcher who dedicated his life to the care and defence of patients with intellectual disabilities. He pledged to one day find treatments to improve their quality of life, and recognised that to achieve this goal it was necessary to first understand the genetics and the disease mechanisms underlying these diseases. Hence, he pioneered, conducted and promoted medical and fundamental research that will ultimately, be the foundation for the development of drugs and treatments for patients with intellectual disabilities.
We are thus committed to continue and expand Jerome Lejeune initiatives by:
1) Identifying, funding and promoting research
→ Basic research that will lead to better understanding of the pathomechanisms underlying intellectual disabilities disorders and the identification of potential therapeutic targets.
→ Innovative translational research to accelerate and improve the development of treatments for Down syndrome and other intellectual disabilities disorders.
→ Preclinical studies to test the efficacy and safety of new treatments.
→ Targeted research in areas of particular interest for the foundation, e.g. specific genes and cross-pathologies (co-occurring diseases).
We focus primarily on Down syndrome, and we stimulate, support and strengthen project-based research aimed at uncovering the causal link between gene expression and physical and cognitive disabilities in people with Down syndrome. Importantly, research on Down syndrome contributes to the discovery of mechanisms and pathways involved in other pathologies like Alzheimer’s disease and leukaemia that affect also non-Down syndrome individuals (cross-pathologies). Therefore, any new knowledge and/or potential therapy derived from the research on Down syndrome, will ultimately benefit the general population.
Importantly, alongside research in Down syndrome, we also support research on other intellectual disability disorders of genetic origin.
2) Caring for patients
The Jerome Lejeune Institute, was founded in 1997 and is nowadays one of the leading medical centres worldwide specialising in Down syndrome and other genetic diseases with intellectual disability. It counts with a multidisciplinary team of specialised medical doctors, therapists and neuropsychologists that provide patients with a personalised follow-up throughout his or her life. Currently, the Institute counts with almost 10000 patients from all over the world. Patients undergo an initial complete medical evaluation, to identify the disease, its causes and consequences, and to make it possible to prevent the possible associated complications. We do not yet know how to cure the intellectual disability. However, we do know how to prevent or treat most of the associated multiple disabilities, such as cardiopathy, epilepsy, sleep apnoea and language problems. The management of these associated conditions greatly improves quality of life.
3) Advocate
In accordance with its statutes, the Jerome Lejeune Foundation also pursues the mission of defence of life and dignity of the individual from its conception to its natural death. Following the example of Jerome Lejeune, the foundation works through educational and legal means to ensure the respect for life. Within the context of an ever-accelerating scientific progress and ideological pressure that pose fundamental questions for society, the Foundation is highly vigilant about bioethical issues in relation to the research it funds.
As one of the three pillars of the Jerome Lejeune Foundation, our “commitment to research” runs alongside the “care of patients” and the strict compliance with the Hippocratic oath “respect for life”.