About Us
About Us
President of the A.M.Mi association
A Word from the President
Dear friends and visitors,
Welcome to the A.M.Mi website
Since 1998, the association has had a clear mission: to support families affected by mitochondrial diseases and to advance research.
These diseases are rare, complex, sometimes silent… but they strike hard, everywhere, and often without warning. In the face of them, we have chosen to respond with solidarity, science, and human commitment.
In 2025, our association enters its 27th year.
What a journey since the beginning! This collective effort has allowed us to bring together more than 200 families, in metropolitan France, in the French overseas departments and territories and abroad, to build bridges between families, clinicians, researchers, and to play a role in the creation of reference centers, the dissemination of reliable information, and the concrete support for affected individuals.
But I do not carry this strength alone. By my side, A.M.Mi relies on a team of committed men and women, often behind the scenes but always present.
A patron, Guy Lecluyse (actor), our executive committee and our board of directors, composed of parents, relatives, and allies, voluntarily give their time and energy to advance projects, respond to families, manage partnerships, and organize activities. Their work is discreet, demanding, constant, and it deserves all my gratitude.
We also have the good fortune to count on a network of regional delegates throughout France, including the French overseas territories, and even beyond our borders, particularly in Belgium, thanks to our partner team Lucia’s Hope, which relays, acts with the same passion and values to inform, support, and raise awareness about mitochondrial diseases.
It is this human chain, this solid collective, that makes A.M.Mi an association on a human scale, but with national, European, and international reach.
Our mobilization has allowed us to forge lasting ties with organizations such as Alliance Maladies Rares, AFM-Téléthon, Eurordis, or International Mito-Patient (IMP), of which we are co-founders.
We are also co-founders of the European Association for Rare and Complex Epilepsy, a trans-pathological network that acts for all forms of rare epilepsy, regardless of their origins.
Together, we make the voices of families heard in healthcare pathways, national plans, and research initiatives.
Of course, the road ahead is long.
But we are at the heart of promising scientific advancements: genetic tools are progressing, data is opening up, laboratories are collaborating globally.
We must remain united, demanding, and active.
So yes, now more than ever, let us unite our forces.
Let us continue this fight.
Let us continue to circulate energy where mitochondria are lacking.
If you are discovering our association today, know that you are not alone.
Whether you are a parent, relative, healthcare professional, researcher, partner, or simply a supporter: you have a place among us.
Together, we transform fragility into strength, and the struggle into a future.
The Association
Taking Action for Mitochondrial Diseases
Mitochondrial diseases are rare, progressive pathologies for which there is still no curative treatment. They affect both children and adults, profoundly impacting their daily lives.
In response to this challenge, the A.M.Mi Association has been committed since 1998 to advancing research and improving patient care.
Our Actions and Objectives
Support Patients and Their Families
Listening, Support, Mutual Aid
Accelerate
Research
funding studies, research grants, collaboration with medical experts
Raise Awareness
and Inform
Communication campaigns, conferences, actions with healthcare professionals
Engage with
Institutions
Advocacy for better recognition and management of mitochondrial diseases
Our Missions
- Create a Network of patients to aid Research.
- Support and accompany: offer moral, and, when possible, material support to patients and their relatives.
- Inform and Share: make scientific and medical advances accessible.
- Improve Care: encourage the creation and recognition of Reference and Competence Centers throughout the territory.
- Train and Raise Awareness: inform healthcare professionals to accelerate diagnoses.
- Encourage Research: fund projects, support researchers, and participate in major scientific advancements.
- Advocate for Families: act with public and private institutions to adapt social and medical provisions.
- Support Parenthood: guide parents towards specialized and secure medical pathways, to meet their desire for a child with appropriate follow-up.
Our
Victories
per year allocated to Research
per year in family support
collected at events
from donations and fundraising
partners and patrons
members
Guy Lecluyse
Our Patron
An actor and comedian appreciated by the general public, Guy Lecluyse has distinguished himself in cinema, on stage, and on television. He is known for his sense of humor, generosity, and ability to touch hearts, even behind a burst of laughter.
But behind the artist, there is a deeply human man, faithful to his values. When one of his childhood friends learned that his daughter had a mitochondrial disease, Guy did not remain a spectator. Deeply moved by this story, he decided to get involved and became a patron of A.M.Mi.
A strong commitment, born of friendship, shared pain, but above all a will to act. By our side, Guy Lecluyse lends his name, his image, and especially his voice to affected families. He advocates for the recognition of mitochondrial diseases, scientific research, and better support for patients, both adults and children.
Present and available, he does not hesitate to call families, reach out to them, and support them in difficult times. More than an ambassador, he is a true ally.
When you know the pain of a loved one, you cannot stand idly by. I wanted to act, in my own way.
His notoriety opens doors, but it is above all his sincerity that touches us. His support is an opportunity for our association, and a powerful symbol for all those who fight in the shadows.
We are proud to have by our side a committed, accessible, and deeply supportive patron.
Who is Guy Lecluyse?
A recognized actor and comedian, Guy Lecluyse has made his mark in both dramatic and comedic roles. He has appeared in notable films such as “36 Quai des Orfèvres”, “Bienvenue chez les Ch’tis”, “Les Tuches”, “Heureux gagnant”, and successful series like “Soda, Profilage, La Promesse, Pamela Rose, R.I.P, Commissariat Central…”
Versatile, he also lent his voice to the famous TV game show MOTUS, embodying for years the program’s well-known voice-over.
AMMI is also...
An executive committee of
7 people
A Board of Directors of 11 members
A listening point for siblings, families, and patients
A committee
for family
support
A host family in the Parisian region to support and accompany families during hospitalizations
Distinction :
Gold Medal from the National Academy of Medicine –
December 17, 2013
