Two associations
Two clearly distinct
missions
One family story behind two different commitments
One was created to support Kélya in her daily life.
The other to take action for Dias-Logan Syndrome and the families affected by it.
Le Sourire de Kélya
A French non-profit association under the 1901 Law, created to support Kélya and provide concrete assistance for needs related to her disability and daily life.
The association is not recognized as being of general interest.
Together for Dias-Logan Syndrome BCL11A-IDD
A French non-profit association under the 1901 Law, recognized as being of general interest and dedicated to Dias-Logan Syndrome :
Providing information, connecting and supporting families worldwide, raising awareness and supporting research initiatives.
Transparency
The two associations are legally and financially separate.
Each has its own purpose, its own resources and its own activities.
Both associations are led by Alexis and Virginie, who were involved in their creation. This shared leadership does not affect their independent operation :
The accounts, resources, donations, expenses and activities of each association are managed separately.
Kélya,
at the heart of our commitment
Kélya is our four-year-old daughter.
Her diagnosis of Dias-Logan syndrome changed our daily life and led us to search for answers, and then to connect with other affected families.
This personal story is where our commitment began.
Le Sourire de Kélya was created to support Kélya in her daily life.
Later, Together for Dias-Logan Syndrome BCL11A-IDD was created with a broader mission : bring families together, share information and support research on Dias-Logan syndrome.
Kélya is at the beginning of this story.
Today, Together is the association for all affected families.
Together for Dias-Logan Syndrome
(BCL11A-IDD)
Bringing families together - Sharing information - Advancing research
Virginie
France
Founder and Treasurer
- Together for Dias-Logan Syndrome
(BCL11A-IDD)
Mother of Kélya, Manoa and Timaé.
Kélya has Dias-Logan syndrome.
Alexis
France
Founder and president
- Together for Dias-Logan Syndrome
(BCL11A-IDD)
Father of Kélya, Manoa and Timaé.
Kélya has Dias-Logan syndrome.
Together for Dias-Logan Syndrome (BCL11A-IDD) was created from the need to bring together families affected by this ultra-rare syndrome and to better organize the available information.
Today, the association connects families around the world, shares information, develops date-collection tools, and works with researchers and healthcare professionals.
Our goal is to better understand Dias-Logan Syndrome, make information more accessible, and contribute, at our level, to research initiatives.
Miriam
Ireland
Secretary
- Together for Dias-Logan Syndrome
Mother of Grace, Thomas and Saoirse.
Saoirse has Dias-Logan syndrome