Key figures

Petit garçon porteur de trisomie 21

A word from the Treasurer

Alexis Dyèvre,
Treasurer, Jérôme Lejeune Foundation

“Dear friends, in the course of the last financial year, the Foundation saw its donations and bequests increase by 20% compared to the previous year. If we remove the extraordinary contribution from wealth tax in September 2011, this increase amounts to 1%. In a context of a profound, long-lasting economic crisis, maintaining the level of collection from the public year after year is a remarkable feat and one that testifies to your faithful generosity.

The cost of statutory actions (7.6 m€) has increased by over 45% between the two financial years. The sums allocated to research (internal, external and the Jérôme Lejeune Institute) have increased in the same proportions and now attain 3.8 m€. This stepped-up effort involving the development of research programmes explains the financial year’s deficit, which amounts to 357 k€. This deficit, when compared with the fund raising dynamics, is amply absorbed by the Foundations shareholding equity, which amounted to 3.9m€ at the beginning of the year.

Thanks to you, the Foundation continues to enjoy a robust financial structure and satisfactory cash flow. It can thus continue to serve the disabled, medical research and life with the highest degree of independence in both thought and action. We thank you heartily for your generosity, your trust and your loyalty: they enable the Foundation to act effectively in a civil society that no longer leaves room for the weaker or smaller of its members.

Financial year from 1st July 2011 to 30 June 2012

Key actions during the 2011-2012 period:
  • RESEARCH: The research activities of the Foundation and the Institute proved to be highly dynamic. The CiBleS21 research programme lead to the identification of a family of active molecules for which a patent was filed in November 2011. The next step, involving animal testing, was immediately launched. In addition to the other programmes underway (MORPHÉE, HANDILONG, IMMUTRI and TRANSCRIPTOME) at the Institute, the latter kicked off the ACTHYF clinical trials. Prof William Mobley was awarded the Sisley- Jérôme Lejeune international scientific award. The 2011-2012 research budget reflects this intense activity.


  • CARE: 2011-2012 was the first active year for the “Groupe Hospitalier Paris Saint-Joseph/Institut Jérôme Lejeune” healthcare cooperation group, set up to secure the future of the medical centre. The number of medical consultations increased. The majority of patients are affected by Down syndrome. The year was also marked by the ISO certification of the BioJeL laboratory’s Biological Resources Centre.
  • ADVOCACY for life: In 2011-2012, the Foundation published the 2nd edition of the Young persons’ bioethics manual” and released the booklet “Gender Theory and Life & Earth Science: decoding 11th grade manuals”. It continued the bioethics debate and made it part of the presidential election stakes, with a flagship press campaign featuring the tag “Down syndrome… so what?” in March 2012. The Foundation also took the fight against eugenics applied to screening for babies with Down syndrome to European level with, amongst others, the “Stop Eugenics Now” petition launched with some thirty associations about the Kruzmane vs. Latvia case underway at the European Human Rights court. Additionally, the Foundation has filed a suit against the Biomedicine Agency that authorised human embryo research programmes in breach of the law. In the spring of 2012, the Administrative Appeal Court of Paris awarded a positive outcome to the first of these suits to the Foundation. 2011-2012 was also marked by high-profile events like the Grandes Soirées pour la Recherche evenings at the Cirque Gruss and the public auctions held at the Hospices de Beaune.








Questions / answers for the Jobs and Resources account

• Donations are up by more than 2 million euros (+36%): Why? The impact of postponing the date for filing 2011 wealth tax to September 2011 has affected our income very significantly. The 2011-2012 financial year thus benefited, in accounting terms, from 2 wealth tax campaigns.

Statutory expenditure increased even more, by 2.5 million € (+49%): How was this possible? With the resources afforded by the double wealth tax and the reserves built up by the positive results of previous years, the Foundation budgeted for a major clinical trial, Acthyf, and other clinical research programmes (1.5 M€). The Foundation also budgeted for a subsidy to the Lejeune Foundation in the USA to develop research overseas (+0.5 M€, in “other statutory actions”) and to the Association of Friends of Professor Lejeune (70 K€).

What does the “other operating income” item include? It includes the activities that finance the operating and collection costs to keep donations going for statutory missions alone. In December 2011, holding the evening events at the Cirque Gruss provided donations amounting to 0.2 M€.

Aren’t collection and operating expenses too high? According to the criteria defined by the Court of Auditors, the Foundation must dedicate at least 25% of its annual expenses to its collection and operating costs. This condition is largely met. As it does not enjoy any State backing, the Foundation must incur significant expenditure to secure its long-term survival.



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