The association
Discover our history, our values and our commitment.
About us
HAPPY BENJI : forward, walk ! is a charity founded in July 2025 by Sophie and Samuel, Benjamin's parents. It is the first association in France and worldwide working on the subject of genetic mutation KIF5Cit is tax-deductible
The goals of the association
- Raise funds to allow Benjamin to benefit from appropriate care at a clinic in the USA,
- Recognize the KIF5C mutation in the French and international health system ORPHANET which classifies and identifies rare diseases,
- Advocate the cause of rare diseases and the cause of the KIF5C mutation in particular,
- Start to launch French medical research on the KIF5C mutation,
- Identify patients in France, Europe and the world,
- Encourage exchanges and cooperation among doctors, families and researchers from around the world,
- Call for donations to support medical research on KIF5C mutation,
- Inform patients and their families about ongoing research,
- Provide information, assistance and support to patients and their families,
- Raise awareness and promote solidarity among all of us in order to support people who are ill or disabled and their loved ones.
The ambassador
Benjamin
My name is Benjamin and I'm 12 years old. I'm the eldest of a family of two. My brother Valentin is eight.
Ever since I was a baby, they say I'm a great charmer with my smile and my big eyes. So once you know me, you never forget me! I am a sweet and nice boy , I love listening and playing music. I also know how to be persistent and determined. I want to prove that I'm capable of doing a lot of things, especially walking !
The birth of the association
We, the founders
We created the association during the summer of 2025, the fruit of a long reflection... We ? Sophie the mom, Samuel the dad and Valentin the little brother.
When the diagnosis is made in 2017, Benjamin is three and a half years old. It's the shock for us to learn that it is the only case in France and the fourth case in the world of a very rare disorder that has no name, if it is the gene that has mutated... this gene KIF5C...
Unanswered questions
Is there medical research on KIF5C mutation ? Treatments ? Hope for healing, progress ? Are there any other patients ? We do not find answers to our many questions and find out that there is no scientific recognition of this disorder without name.
Then begins our struggle in a French medical system without human and financial resources, forcing us to seek alternative solutions such as hippotherapy and private care to help Benjamin in his special needs.
Caught up in the daily routine of disability, the years pass before our eyes, often leaving us destitute but never without hope.
Breaking isolation
We take the initiative to join a private group on Facebook and find patients worldwide. Thousands miles away, we become aware of the isolation and distress of everyone facing this KIF5C disease. Bonds are formed with these brave and lonely families. 30 families so similar and so different at the same time.
Benjamin's incredible potential
We are told that « Your son will never be able to walk. », « He is not motivated», « He'll never eat with a spoon », « He does not communicate with his environment »...
Words that echo forever in our heads, but Benjamin shows us every day that he wants to progress and that we must believe in him. Our research then leads us to the United States, in May 2023, in a clinic in Louisiana where innovative and adapted therapies are performed.
During this 3 week stay, Benjamin proves his incredible potential and makes real progress !
There we meet American families who are members of our private group and we can finally share experiences in real rather than on social network !
A message of hope and optimism
We return to France with the feeling that we must change everyone's perspective and fight this battle together! Unfortunately, France is late in taking charge and medical research, compared to the United States and other countries.
Since the only way to achieve the impossible is to believe it is possible, we decide to create the association in order to allow Benjamin to have medical care adapted to his genetic disorder in USA.
He will also be the ambassador of his KIF5C mutation to convince the medical profession to undertake gene therapy research for KIF5C mutation!
We give the name of « Benji » to HAPPY BENJI association: forward, walk ! because Benjamin is the first official ambassador of the KIF5C mutation.
We also want to carry a message of hope and optimism, and make our lonely fight a solidarity fight in France and abroad.
We will be happy to take you on our wonderful adventure.
Sophie
Mother – President of the association
Samuel
Dad – Vice-president of the association
Benjamin
The association's ambassador
Valentin
Benjamin's little brother
The association's logo
Our identity
The association's logo was designed to convey this optimistic message., using two strong symbols: that of the wheelchair to refer to disability and that of a leap forward to show that it is not impossible to get out! It expresses the idea of progress, achievement , of passage to action in a joyful universe in the colours of the international code of rare diseases (blue, green, pink). The evocation of a leap forward also echoes our leitmotif « Forward, walk ! ». We wanted a visual identity that was simple, positive, and full of energy !
by our side
Our partners
Les Garennes-sur-Loire town hall
Les Garennes-sur-Loire is a new comma resulting from the consolidation of the communes of Saint-Jean-des-Mauvrets and Juigné-sur-Loire (seat of the association).
The town hall of Garennes-sur-Loire supports HAPPY BENJI: forward, walk! by relaying our communication actions.
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Website : The Garennes-sur-Loire
Bistrot The 1006
Restaurant located on the town of Juigné-sur-Loire.
Laurent and Pauline LÉVEQUE responded to our association's call as soon as it was launched.
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Facebook : Bistrot The 1006
Garennes Loire Basket Club 49
Association sportif de Juigné-sur-Loire offering the practice of basketball for all.
Arnaud CHAMPION, president of the club and his team have been supporting us since the launch of the association.
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Website : GLBC
Bakery pastry CROMBEZ
Maison CROMBEZ, bakery pastry craft located in the commune of Juigné-sur-Loire.
Anne-Charlotte, Thomas, Adeline and all the team are kind enough to organise specific sales for the benefit of the association.
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Facebook : House CROMBEZ
Football Club Louet Juignéen
Association sportif de Juigné-sur-Loire offering the practice of football for all.
Aude CAILLEAU, president of the club, and Nathan CAILLEAU, sports educator, actively promote the association to their licensees and local contacts.
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Website : FCLJ
GOUABAU-PIHOUÉE pharmacy
Officine located in the commune of Juigné-sur-Loire.
GOUABAU and PIHOUÉE have been with us since the beginning of the HAPPY BENJI adventure : forward, walk !
IMDEx (Adapted Oral Medicine)
IMDEx (International Medical and Dental Expertise) is a French company based in Angers.accompanying and training of Professional oral medicine adapted to patients with specific needs (disability, dependence, complex pathologies).
IMDEx helps practitioners to better accommodate and support « extraordinary patients » (disabled, dependent, rare pathologies) by providing them with tools, training and organizational and strategic support.
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Website : IMDEx
by our side
Acknowledgement
We extend our thanks to all the professionals in the medical sector with whom we collaborate, and in particular the Dr. Magalie BARTH, neuropaediatrician practising in the genetics department of CHU d'Angers and Professor Nadia BAHI-BUISSON, clinician geneticistNECKER AP-HP Hospital of Paris and researcher associated with theIMAGINE Institute in Paris, and support for health sectors Rare diseases, AnDDI-Rares and Science Challenge with whom we are working on the recognition and classification of the pathology of the KIF5C gene in the health system of Rare Diseases ORPHANET.
Finally, we warmly thank our local support for their listening and their contribution to promote the association: Isabelle and her team of Salon André Angers, Audrey COULIOU Podo-orthesist in Martigné-Briand, all the team dAnjou Textile Création in Trelaze, not to mention the bank Crédit Mutuel, Mûrs-Érigné antenna and association Trail Loire & Vignes.
