Presentation
Social Mission
Our Philosophy and Approach
Our social mission stems from a very concrete experience and a conviction: while the search for a future treatment is essential when a rare genetic disease profoundly affects the central nervous system, the lives of the affected individuals and their families are unfolding right now.
We focus on rare genetic diseases affecting the central nervous system—with a particular interest in Alternating Hemiplegia of Childhood (AHC)—as well as other neurological disorders and brain dysfunctions.
We have deep respect for the work done worldwide by families, associations, researchers, and everyone contributing to raising awareness of these conditions and supporting scientific research. Our aim is to complement these efforts by focusing specifically on the present and the short term.
Research inevitably moves at its own pace. Meanwhile, children grow up, becoming adolescents and then adults. Seizures, paroxysmal episodes, and neurological, metabolic, or functional difficulties—along with their impact on daily life—persist. Families must make decisions, seek out professionals, understand often complex information, and try to find appropriate solutions for situations that can be constantly evolving.
The rarity and complexity of some of these conditions can make it difficult to access professionals with sufficiently specialized experience. We therefore consider family involvement, access to high-quality information, and the ability to communicate effectively with professionals to be essential elements.
Our approach involves observing, questioning, researching, sharing experiences, and exploring avenues that could improve the condition and quality of life of those affected, all while maintaining an open, multidisciplinary perspective.
We do not claim to have all the answers. On the contrary, our work often begins with questions. Some gradually yield partial answers, while others open up new lines of inquiry. We wish to share and develop this approach with families, professionals, and individuals willing to contribute their experience or knowledge.
A project already underway
Our social project is currently in the conceptualization, structuring, and development phase. While its final legal structure has not yet been established, several of its key areas of activity are already active.
We chose to begin with areas where our experience, personal commitment, work, and ability to build connections could make a tangible contribution immediately, without requiring significant financial resources at the outset.
Other ambitions will require greater resources, the securing of funding, the establishment of specific partnerships, and the gradual completion of necessary legal and organizational steps. These will be developed as the project takes shape.
Some of the areas we are already working on are detailed on this site, allowing us to share our approach, our insights, and information we believe may be useful to those involved.
Families at the heart of the project
We also place great importance on the autonomy and financial independence of families. Having the means to access information, properly support a highly dependent person, and make decisions with greater freedom can have a decisive impact on family life.
All families deserve the same respect. Their resources, backgrounds, experiences, and problem-solving abilities may vary widely. Yet, behind every situation lie real people—each with their own needs, challenges, skills, and personal history.
Our goal is to listen, understand, and—to the best of our ability—help everyone according to their specific needs.
We welcome ideas, experiences, and constructive feedback. This project is designed to evolve, learn, and grow through the contributions of those who wish to be involved.