The foundation was established by Doña María Isabel Pastor Alfonso, in a public deed granted before the Madrid notary Don Andrés Domínguez Nafría, on November 4, 2019, and recorded in said notary's record book as deed number 4.197. Entered into the “Registro de Fundaciones de competencia Estatal” (Registry of foundations) on 24 January 2020 with nº of registry 2279.
María Isabel Pastor Alfonso.
CAPITAL OF THE ESTABLISHMENT
ESTABLISHMENT, PURPOSE AND BENEFICIARIES IN THE STATUTES
LIBELLAS FOUNDATION is a non-profit organization, whose assets are earmarked in the long-term for the fulfillment of the purposes of general interest detailed herein.
The registered office of the Foundation is located in C/ Doctor Fleming, 30, 7º A. Madrid 28036 SPAIN.
The Foundation has a nationwide scope; it may operate within the whole national territory, with no particular autonomous community as the main destination of its performance.
The Foundation may also work beyond national territory in the pursuit of its foundational purposes.
The purpose of the Foundation will be to promote and encourage the development of research as well as the study of dysfunctions in cellular excitability, paying special attention to the NALCN ionic channel, syndromes and related diseases. Moreover, the Foundation will offer care and support to patients and their families.
NALCN is an ionic channel that plays a critical role in the regulation of the electrical activity of excitable cells, including neurons. NALCN’s pathogenic variants lead to two rare syndromes, CLIFAHDD and IHPRF. Additionally, NALCN may be involved in other diseases, such as psychiatric disorders (autism, bipolar disorder, schizophrenia, addiction…), epilepsy and cancer.
In order to achieve the purposes hereinabove mentioned, the Foundation will carry out the following activities:
• Funding, management, promotion and monitoring of research programs and projects related to the study of NALCN ionic channel, this includes clinical trials.
• Fund raising for the purpose of assisting national and international laboratories in specific research of projects focused on human disease defects in NALCN. This includes the creation of specific cellular and animal models as well as research about these models in order to find molecular mechanisms associated with the disease, as well as the development of new therapies.
• Working to be a connection between those affected and the research projects, creating working groups and tools for the exchange of information and cooperation between patients and their families with clinicians and researchers. Patients with very rare associated syndromes are: the recessive pathogenic variant of NALCN and UNC80 it is related to a syndrome called IHPRF type 1 (OMIM #615419) and type 2 (OMIM #616801), respectively. The dominant pathogenic variant of NALCN is responsible for a syndrome called CLIFAHDD (OMIM #616266).
• Promoting and funding the study and research of NALCN’s involvement in other pathologies, such as psychiatric diseases (autism, bipolar disorder, schizophrenia, addiction…), epilepsy and cancer.
• Holding conferences, seminars, informative and educational activities regarding the implication of the NALCN ionic channel in the cellular excitability defects found in human diseases, involving scientific and clinical society as well as patients and their families in this awareness.
• Contributing to any activity that improves the situation of those affected by NALCN and their families, promoting the establishment of professional care units for a comprehensive and specialized management of patients, and facilitating access to genetic studies if there are cases of clinical concern.
• Any other activity that may lead or contribute to the fulfillment of the foundational purposes.
This list of activities does not imply any order of preference.
Additionally, in order to obtain revenue, the Foundation may carry out commercial activities whose purpose is linked to the foundational purposes or that are complementary or accessory of the aforementioned, subject to the regulatory norms on the defense of competition.
1. The founding purposes of the Foundation are directed, in general terms, to the collectives of persons mentioned below:
"Patients and their families; Clinicians and researchers that are interested in NALCN and associated diseases and in cell excitability dysfunctions.
2. The Board of Trustees, when determining the beneficiaries of the Foundation's activity, will proceed in accordance with principles of impartiality and non-discrimination.