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How the Association Works

Board Members

Emma DEL-REY

President

I am Emma DEL-Rey, President of the A.M.Mi association and mother of two children, including Karen, who is now 20 years old. The first signs of her illness appeared when she was 6 months old. At 3 years old, a biopsy was performed, but even today, we do not have a complete diagnosis. The diagnostic odyssey has unfortunately been part of our lives for all these years. This personal commitment has led me to fully dedicate myself: to unite, inform, and support. This is what I have devoted all my energy to for many years, for all mitochondrial diseases, with the hope that one day, our patients will finally be able to access appropriate therapy.

Karine MILLASSEAU

Vice-President

In 2001, Laurie was six months old when the diagnosis came: a mitochondrial disease. That day, my life changed forever. But I never gave up. I sought a listening ear, guidance, a space where I wouldn't feel alone: that's how I discovered A.M.Mi and joined without hesitation. She left us in 2009, but I couldn't let her fight fade away. Since then, I continue, for her and for all the others, so that every family finds support and no one is ever forgotten. So that one day, finally, research will pave the way for real treatments, beyond symptomatic care.

Françoise TISSOT

Vice-President

Having volunteered early on in the fields of health, diagnosis, and law for 47 years. Involved with A.M.Mi since its inception: late 1996-1997... Personally invested, and concerned for all those navigating this journey: patients, families, as well as for and with our researchers, clinicians, benefactors, regulatory bodies, and community groups... Fiercely motivated in all areas concerning us.

Nathalie BIENCOURT

Treasurer

I am Simon's mother. He passed away in 2011 at the age of thirteen and a half due to a mitochondrial disease diagnosed when he was only eighteen months old. Simon was a joyful, courageous, and radiant child who drew all his energy to fully enjoy each day. Today, I dedicate my energy to the A.M.Mi association, hoping that one day we will overcome these formidable diseases and that no child or adult will have to suffer from them again.

Stéphanie ROULOT

Deputy Treasurer

A loyal member of the AMMi Association for over 15 years, I now offer my financial management skills to the board, serving as assistant to the treasurer. My commitment is deeply personal: in memory of my daughter Ninon, who was taken by mitochondrial cytopathy.

Amélie BONIN

Secretary

I am Amélie Bonin, mother of 3 daughters, including 6-year-old Louise, who was diagnosed with mitochondrial cytopathy at 9 months old. I used to be a nurse, but since 2022, I have become my daughter's caregiver. I live with the rhythm of her illness and support her through her progress, her difficult moments, but especially her moments of laughter. It is this smile that inspires me to lead this fight to advance research and help families. My husband Willy and I have been members since 2020. A.M.Mi is an association that has greatly supported us through joyful and difficult times. I found a true family there, where the struggle is very real and powerful!

Brigitte BONNECAZE

Deputy Secretary

My daughter Anaïta was 10 years old when she was diagnosed with MELAS syndrome in 2001. I immediately looked for a place to listen, exchange, and get advice: I discovered A.M.Mi. I then committed myself to the association, and even though my daughter has not been with us since 2008, I continue this fight to honor her memory, but especially for other patients awaiting a treatment beyond symptomatic care.

Maria AFONSO

Board Member

Introduction: I am Maria, Oscar's mother. He suffered from Leigh syndrome. I joined A.M.Mi in 1998, almost at its inception, and naturally became deeply involved. Oscar passed away in January 2010, but for me, it was clear that I had to continue the fight. Because his journey, like that of so many others, deserves to be championed, supported, and never forgotten.

Willy BONIN

Board Member

I am Willy Bonin, a member of the A.M.Mi association since 2020. My granddaughter Louise, 6 years old, suffers from mitochondrial cytopathy. Since the diagnosis was announced, family life has changed a lot, but A.M.Mi has provided us with support during both joyful and difficult times. It has become a fight for patients and their families in their daily lives.

Keyvan KARIMKHANI

Board Member

The association is the only legal, non-profit organization where solidarity and humanity can be found. Our personal story led A.M.Mi into our lives, allowing us to find a family with whom to share. Today, although my sister has passed away, we hope that our journey will help those who follow.

Yvon MARTIN

Board Member

Father of Ninon, who suffered from NARP syndrome and passed away far too soon in 2017, I have been a member of A.M.Mi for about fifteen years. This association has always been a place of solidarity, hope, and sharing for me. Today, as a member of the board of directors, I wish to give back some of what I have received, by helping to protect the privacy of members and encouraging everyone to get involved in our projects.

Executive Board Composition

President:
Emma DEL-REY
assoammi@gmail.com
+33 (0)6 30 84 58 27

Association Headquarters: 6 Imp. Jacques Prévert, 31 470 Sainte-Foy-de-Peyrolières

Vice-Presidents:

Karine MILLASSEAU
karine.assoammi@gmail.com
+33 (0)6 19 57 05 69
14 La Martelière, 85250 Chavagnes-en-Paillers

Françoise TISSOT
alantissot@yahoo.fr
+33 (0)6 09 96 77 80
20 Av. du Parc de Lescure, 33000 Bordeaux

Secretariat: assoammi@gmail.com

Secretary : Amélie BONIN
22 Imp. Vallée, 85250 Chavagnes-en-Paillers
+33 (0)6 26 36 77 20

Deputy Secretary : Brigitte BONNECAZE
+33 (0)6 64 82 06 46
3 Imp. Ebelot, Apt 14, 31200 Toulouse

Accounting Department: assoammi@gmail.com

Treasurer : Nathalie BIENCOURT
+33 (0)7 86 51 47 11
11 Rue de la gare, 80250 Ailly-sur-Noye

Deputy Treasurer : Stéphanie ROULOT
+33 (0)6 50 43 85 99
3 Allée du Bois, 78200 Magnanville

Regional Representatives

Meet the Delegates

Our association relies on a strong network of committed men and women. Our regional delegates are the ambassadors of our mission on the ground. Present in mainland France, Reunion Island, Belgium, and beyond our borders, they play a key role: informing, supporting, raising awareness, and fostering connections between families, healthcare professionals, and the association. Their mobilization is an essential driving force behind our daily actions against mitochondrial diseases.

France – Regional Delegates

DEL-REY Emma
Email: assoammi@gmail.com
Phone: +33 (0)6 30 84 58 27

Covered Area : Midi-Pyrénées Languedoc-Roussillon / Provence Alpes-Côte-D’Azur / Corsica / National and International

Joined the association in 2007

Personal Quote : My fight is one of love, memory, and hope. Every life touched by a mitochondrial disease deserves to be supported, heard, and defended. I transform my pain into action, and uncertainty into Hope.

Main Missions :

Coordination of regional delegates, National and International
Organization of local events (forums, workshops, meetings)
Communication with institutional partners
Representation of the association at official events
Training and development
Organization of thematic or awareness days
Conferences
Support and listening for families
Joined the association in 2007

BONNECAZE Brigitte (in tandem with Emma DEL-REY)
Email: brigitte.vahed@wanadoo.fr
Phone: +33 (0)6 64 82 06 46
Covered Area : Midi-Pyrénées Languedoc-Roussillon / Provence Alpes-Côte-D’Azur / Auvergne Rhône-Alpes

Personal Quote : “Never give up, persevere, always keep Hope, this is my mantra”

Main Missions :

Communication with institutional partners
Representation of the association at official events
Support and listening for families
MELAS Syndrome Referent
Joined the association in 2001

MILLASSEAU Karine
Email: karine.assoammi@gmail.com
Phone: +33 (0)6 19 57 05 69

Covered Area: Brittany / Pays de la Loire / Alsace Lorraine Champagne Ardennes / Bourgogne Franche-Comté / departments 37 and 36 in the Centre region / departments 79 and 86 in Aquitaine Limousin / Belgium Referent Delegate

Personal Quote :
Hope is not passivity; it is a permanent and collective struggle. My pain has become a strength, memory my fight, and my story a hope.

Main Missions :

Coordination of international delegates in tandem with Emma DEL-REY and Belgium referent with Tiffanie ONKELINX and Amory DERENNE
Organization of local events (forums, workshops, meetings)
Communication with institutional partners
Representation of the association at official events
Training and development
Support and listening for families
Organization of thematic or awareness days
Conferences
Joined the association in 2001

AFONSO Maria

Email: mariaafonso@free.fr
Phone: +33 (0)6 82 81 24 65

Covered Area : Île de France / Departments 28 and 45 of Centre, 89 of Burgundy and 10 of Champagne-Ardennes

Personal Quote : Together, we are stronger!

Main Missions :

Communication with institutional partners
Leigh Syndrome Referent
Representation of the association at official events
Support and listening for families
Joined the association in 1998

BERGERIN Carine

Email: carinebergerin@gmail.com
Phone: +33 (0)6 68 54 03 73

Covered Area : Île de France / Departments 28 and 45 of Centre, 89 of Burgundy and 10 of Champagne-Ardennes in tandem with Maria AFONSO

Personal Quote : “Love looks not with the eyes, but with the mind.” William Shakespeare.

Main Missions :

Communication with institutional partners
Representation of the association at official events
Support and listening for families
Joined the association in 2008

BIENCOURT Nathalie

Email: nbiencourt@orange.fr
Phone: +33 (0)7 86 51 47 11

Covered Area : Nord-Pas-de-Calais / Normandy

Personal Quote : I dedicate my skills and commitment to A.M.Mi to honor the memory of my most beautiful encounter, my Warrior, my son Simon, who never stopped loving life and sharing his laughter.

Main Missions :

Organization of local events (forums, workshops, meetings)
Communication with institutional partners
Representation of the association at official events
Support and listening for families
Joined the association in 2001

TISSOT Françoise

Email: alantissot@yahoo.fr
Phone: +33 (0)6 09 96 77 80

Covered Area : Aquitaine Limousin Poitou-Charentes / Auvergne Rhône-Alpes

Personal Quote : Some dreams require a lifetime of commitment to one day become reality.

Main Missions :

Organization of local events (forums, workshops, meetings)
Communication with institutional partners
Representation of the association at official events
Training and development
Support and listening for families
Conferences
Joined the association in 1998

Reunion Island – Territorial Delegate

ARMOET Aldo
Function : Reunion Island Delegate
Email: aldo.armoet@orange.fr
Phone: 0692 00 31 25

Covered Area : The entire island

Personal Quote : Not toute ansamb nous va avancer ti lamp ti lamp
“Together we move forward little by little”

Introduction : Aldo, 60 years old, father of Tristan (33 years old), who was diagnosed with a mitochondrial disease at the age of 3.
For over 30 years, I have been fighting this battle by his side, and it is far from over.
A member of A.M.Mi since its inception, I was touched by its commitment. From a simple member, I became a delegate, then general delegate, vice-president… always present on the ground, from events to family weekends.
Today, back on my island, I wish to unite those concerned and ready to fight against mitochondrial diseases.

Main Missions:

Relations with local authorities
Organization of thematic or awareness days
Communication with institutional partners
Representation of the association at official events
Support and listening for families
Joined the association in 1998

Belgium – Country / Regional Delegate

DERENNE Amory & ONKELINX Tiffanie
Function : Belgium Delegates (Godmother Millasseau Karine)
Email: luciashopeasbl@gmail.com
Phone:
Amory : +32 4 98 25 26 76
Tiffanie : +32 4 94 48 37 70

Covered Area : Belgium

Personal Quote : Transforming pain into hope is giving meaning to the unacceptable.

Main Missions:

Building connections between families
Listening, guidance, and support for families
Raise awareness among medical professionals about A.M.Mi’s work by disseminating information
Organize events
Collaborate with the French A.M.Mi Association against Mitochondrial Diseases
Organization of thematic or awareness days
Conferences
Joined A.M.Mi in August 2023 & Creation of Lucia’s Hope ASBL in February 2025

in Paris

Supportive Housing for Families of Hospitalized Patients

Mr. & Mrs. CHUFFART Michel & Dolores
Noisel (77)
Email: assoammi@gmail.com

Dolores: Some time ago, I was diagnosed with MELAS syndrome. This diagnosis marked a turning point in my life, filled with uncertainties, doubts, and at times, loneliness in the face of a rare and little-known disease.

It was during this difficult period that we crossed paths with the A.M.Mi association. From the very first contact, we received a warm welcome, compassionate listening, and above all, invaluable support. The entire A.M.Mi family accompanied us on our journey with the illness, whether through advice, shared experiences, or simply a reassuring presence.

Today, A.M.Mi is much more than an association to us. It has become a true second family. And it is only natural that we wished to give back what we had received, in turn.
We now help families in need, particularly by providing accommodation when they must come to the Paris region for medical appointments.

Being able to offer some comfort and support is our way of saying thank you, and of upholding the values of mutual aid and solidarity that are the strength of our association, A.M.Mi.

Listening to Siblings: The Voice of Siblinghood

A space for siblings: because they too experience the illness

Keyvan KARIMKHANI
Toulouse
Phone: +33 (0)6 65 35 44 02
Email: keyvankarim@gmail.com

A member of A.M.Mi for over 20 years, I was Anaïta’s brother until she was 18, the day she ended her fight against the illness. I witnessed the association’s beginnings, from wonderful moments to more complicated times with COVID.
I am a sibling representative to share my experience as a brother. It is often difficult to find your place, to exist, to accept what is happening when you see your brother or sister ill. You don’t allow yourself to live fully, you feel guilty, you fight against something stronger than your will.
My experience shaped me, and there were times when I wished I could share my emotions with someone who understood.
I forbade myself from feeling bad because I had a sister fighting against something stronger than herself; I forbade myself from complaining because I had a mother battling an unknown disease while still holding onto hope, even though we knew the outcome.
When illness strikes, there is the patient and their family.
I did what I could with the means I had. If there was one thing I would change about myself, it would be to allow myself to be sad or express my emotions. The sadness is such that you cannot express it in front of your sick sister out of shame or modesty.
Today I understand that I could have expressed it even in her presence.

I offer to be that listening ear I never had, not to tell you what to do, but simply to listen to you.

Mélina GERVAIS
Vendée
Phone: +33 (0)6 72 60 57 62
Email: Melie.legin@orange.fr

I am Mélina, married and a mother of two little girls, Malone (7) and Lyra (2). I am part of the “sibling community” – those brothers and sisters who live alongside a child affected by a rare disease. Today, I have chosen to listen to all those who, like me, grew up in the shadow of an illness that is difficult to understand and bear.
My involvement dates back to 2001, when I joined the A.M.Mi association alongside my mother. I was 13 years old at the time. My little sister Laurie was affected by mitochondrial cytopathy, an ordeal that profoundly disrupted my life, my heart, and my bearings.
Drawing on this experience, I wish today to offer what I would have liked to receive at the time: an attentive ear, genuine support, and the sharing of an experience that can, I hope, comfort and guide other siblings on this sometimes difficult path.
Today, I am here for them. For you. To extend a hand, offer true listening, and share what I would have liked to receive at the time: support, understanding, and the strength to feel less alone.
Being the sibling of a sick child is a silent struggle. Together, let’s make it heard.