We are thrilled to invite you to watch the incredible moments from our second International CTNNB1 Syndrome Conference on our YouTube channel. This event was a significant milestone for the CTNNB1 Foundation, showcasing the remarkable progress and unwavering dedication of our community.
Our 2nd International CTNNB1 Syndrome Conference & Natural History Study brought together 83 beautiful CTNNB1 dragonfly children and their families from around the world. This represents roughly 20% of all known cases! Families traveled from 19 different countries, including parts of Europe, Canada, the USA, Brazil, Mexico, Chile, Vietnam, and even Australia, all united by the shared goal of creating a better future for their children.
The conference exceeded all our expectations. Over three full days, a dedicated medical team of 30 professionals conducted neurological, physiotherapy, and psychological exams, blood draws, EEGs, and ophthalmologic exams. Coordinating these exams in various languages was an unprecedented challenge that we successfully met.
We extend our deepest gratitude to the medical experts who made this possible led by Dr. Damjan Osredkar and his team at the Pediatric Hospital and dr. Laurent Servais and his team at the Oxford University and many clinical psychologists led by Mercè Pallarès from University of Deusto.
Your belief in and support of our dreams made this event a reality.
To ensure parents could attend the conference and connect with other CTNNB1 families, we had over 80 volunteers providing childcare. The children enjoyed a variety of activities, including musical workshops, a city train ride to the castle, visits from Frozen heroes, policemen, and firemen, clowns with balloons, disco parties, and more!
The scientific sessions were supported by 35 outstanding speakers who shared their expertise and insights. Thank you for contributing to the advancement of CTNNB1 research and care.
This conference would not have been possible without the support of our partners, sponsors, and donors.
After more than six months of planning and organizing, our hearts are full, and we are more committed than ever to continuing the fight for a better future for our children.
A Mother’s Dream
One of our CTNNB1 mothers shared a poignant message that encapsulates the spirit of our community:
“Thank you very much for hearing the same screams there, for not having to warn them not to disturb others when they scream, and for being able to hug the mothers whose eyes I see the same sadness in. Maybe I’ll have a chance, one day I’ll watch my daughter comb her hair in front of the mirror. She’ll call me and say, ‘Mom, I’m going to be late.’ She will hold hands with her sister and run to the sea. She will hug me tightly and say, ‘Mom, I love you so much.’ Thank you for giving me these beautiful dreams.”
Join Us
We invite you to visit our Youtube and dive in in the various presentations and moments from our conference. Witness firsthand the incredible work being done and the hope that drives us forward.
Thank you to everyone who has contributed to our success and dreams, especially our children, who are the inspiration behind everything we do!
Together, we can achieve a brighter future for all affected by CTNNB1 syndrome.