EVENTS, ACTIONS...
Make known, Support, Inform, Engage, Collaborate.....
RARE DISEASES WALK - TELETHON 2024
Thank you Adele! 🩷💙💚
You were a champion at the Rare Diseases Walk this Saturday, November 30.
It was a pleasure to walk with you, Hélène, Simon, and Marie-Céline, to meet friends, acquaintances and to make lots of others!
We will remember Alex, Clémence, Lucas, the super nice ladies who explained and let you try out their wheelchair, the bus to rest... the smiles, the shared dances, the pretty Blue, Pink and Green colors of rare diseases...
Alice thanks you for the balloon you gave her, which crossed Paris, took the metro and the train to end up in her room in Rouen. 🧡
Thanks to the Rare Diseases Alliance and AFM-Telethon for these suspended moments.
Thank you to you, the Vaillants and friends of the Vaillants, for being with us from afar with your "likes" and your messages!
Thanks to Marie-Céline Pestrinaux from Epilepsie France for sharing this walk with us
Thank you to the Groupama Foundation for walking with rare diseases, it was a pleasure to meet you.
SEE YOU NEXT YEAR!!!
Calls for applications for MYT1L FAMILIES study projects
CALL FOR APPLICATIONS - PRELIMINARIES TO THE DESCRIPTIVE STUDY PROJECT OF LANGUAGE DISORDERS, COGNITIVE DEVELOPMENT AND BEHAVIORAL DISORDERS IN MYT1L SYNDROME
This concerns the Valiants of FRANCE: CHILDREN, ADOLESCENTS, and ADULTS!
Study carried out in Rouen with travel support conditions,
BUT if you cannot travel and would like to participate, contact the association: extravaillants@gmail.com
For any information, contact the association.
We need collective mobilization! Better understanding means better support!
PARTICIPATION OF FAMILIES IN THE GENIDA PLATFORM IN ADDITION TO THE STUDY PROJECT
In French, in English, in Italian, in Spanish
As part of his descriptive study of language disorders, cognitive development and behavioral disorders in MYT1L syndrome, Dr. Coursimault, Rouen, France, encourages all MYT1L variant carriers - children, adolescents and adults - to participate in the GenIDA study >>> rdv on https://genida.unistra.fr/
As part of his descriptive study of language, cognitive development and behavioral disorders in MYT1L syndrome, Dr Coursimault, Rouen, France, is encouraging all careers of MYT1L variants - children, adolescents and adults - to take part in the GenIDA study >>> visit https://genida.unistra.fr/
In this study's description of language transmission, cognitive and behavioral problems in the MYT1L syndrome, Dr. Coursimault, from Rouen (France), led all MYT1L variant carriers - children, adolescents and adults - to participate in the GenIDA study >>> visit https://genida.unistra.fr/
After the studio's description of language disturbances, cognitive and behavioral problems in the MYT1L syndrome, the doctor Coursimault, in Rouen, France, includes all versions of the MYT1L variant - babies, adolescents and adults - to participate in the GenIDA studio >>> visit https://genida.unistra.fr/
Conferences June 6, 2025
EVENT ROUEN JUNE 5, 6 & 7, 2025
2ND FAMILIES, CLINICIANS AND RESEARCHERS DAY ON THE MYT1L GENE
REGISTRATION IS OPEN!
FREE CONFERENCES, OPEN TO ALL - REGISTRATION REQUIRED
FACE-TO-FACE AND VIDEOCONFERENCE - FRENCH/ENGLISH SIMULTANEOUS
Program (full details in images and in english)
June 5, 2pm to 5pm: informal family/doctor meetings
June 6, 9:30am to 5pm: conferences/workshops on Vaillants and siblings
June 7 from 10am to 3pm: Family Day
The days of June 5 and 7, as well as childcare on the day of the conferences, are strictly reserved for families.
HOW TO REGISTER?
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CONFERENCE DAY on June 6, 2025
Register on the Anddi- Rares health network link (face-to-face or videoconference, registration required for both) => Link: https://www.linscription.com/pro/activite.php?P1=190052
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DAYS on June 5 and 7, 25 + HOTEL NIGHTS + Vaillants/fratries workshops on the day of the conferences
To register, please contact Les Extra-Vaillants MYT1L. Questionnaire (click on the underlined word) to be completed and returned to: extravaillants@gmail.com (same e-mail address for all requests)
Please note: all definitive registrations are binding. If you wish to cancel, except in cases of force majeure, you will be charged for the costs incurred.
A HUGE THANK YOU to the professionals who will honor us with their presence.
A HUGE THANK YOU to the Centre de Référence des anomalies du développement du CHU de Rouen, in particular Dr Juliette Coursimault, and to the AnDDI-Rares health network for their trust and support.
A HUGE THANK YOU to the Faculty of Medicine for opening their facilities to us, which will be great for all ages.
HEIDELBERG, GERMANY JUNE 2025 - MINI SYMPOSIUM MYT1L GENE
It's a great pleasure and honour for Les Extra-Vaillants MYT1L to be part of a dedicated Mini-symposium on MYT1L syndrome during the 4th Triennial Meeting of the International Alliance of Academies of Childhood Disability (IAACD) and the 37th Annual Meeting of the European Academy Of Childhood Disability (EACD) in Heidelberg, Germany, from June 24th to 28th, 2025.
Together with the chairs, Prof. Dr. Maja Hempel, Head of Genetic Outpatient Clinic, University Hospital Heidelberg, Germany, and Dr. Moritz Mall, research group leader, Hector Institute for Translational Brain Research at the German Cancer Research Center, we will be presenting along with Dr. Juliette Coursimault, clinical geneticist, CHU Rouen, to take part in a symposium on the role of MYT1L in health and disease at these EACD and IAACD events.
Huge gratitude to Dr Moritz Mall for his support and this incredible opportunity to promote awareness and discuss future directions for MYT1L Syndrome at this world-leading conference focused on childhood-onset disabilities.
🔹 Program details of the MYT1L Mini-symposium chaired by Dr. Moritz Mall: Advancing Understanding and Care for MYT1L Syndrome: A Holistic Perspective
- Behavioral traits and multidisciplinary care for individuals with MYT1L syndrome
Juliette Coursimault, MD, Clinical Geneticist, Rouen University Hospital, France
- Insight into the molecular mechanisms and therapeutic options underlying MYT1L syndrome using human stem
cell models
Moritz Mall, PhD, Researcher, German Cancer Research Center (DKFZ), Germany
- Genetic testing, diagnosis, and possible drug treatments for MYT1L syndrome
Maja Hempel, MD, Clinical Geneticist, University Hospital Heidelberg, Germany
- Lived experiences and perspectives of families affected by MYT1L syndrome
Valérie Salomone, parent advocate, President, Les Extra-Vaillants MYT1L, France
More information : https://eacd-iaacd2025.org/
Many thanks to Gan Assurance and the Groupama Foundation
The donation requested by the association Les Extra-Vaillants MYT1L from the Groupama Foundation has two objectives:
1. The acquisition of an IPad 10 tablet and accessories for Les Vaillants (France) in order to :
Promote the development of alternative and augmented communication
Promote the development of learning
Promote the autonomy of people with MYT1L syndrome
The aim is to help families put in place more appropriate tools that are not covered by the MDPH or for which it still has to pay. A broader support fund is also a second objective.
=> For more information, contact: extravaillants@gmail.com
2. Welcoming and supervising families and Vaillants at the 2nd International Day for Families, Clinicians and Researchers on the MYT1L gene on 5, 6 and 7 JUNE 2025. To date, more than 115 people, Valiants and their families are expected from all over France and abroad (Chile, South Africa, Poland, Serbia, United States, United Kingdom).
Find the full publication on the Groupama Foundation website with testimonials from Familles de Vaillants (click on the underlined words)
FEBRUARY 29, 2024: INTERNATIONAL RARE DISEASES DAY
YOU HAVE SHARED OUR THOUSAND COLORS THANK YOU!
TELETHON 2023
WALK FOR RARE DISEASES
PARIS- DECEMBER 9
😍🧡 SATURDAY, DECEMBER 9: WALK FOR RARE DISEASES - TELETHON 2023
Thank you to Alice, Clémence and Neïa our MYT1L Extra-Vaillants ambassadors!
Thank you to friends and family for being there with us for this very special moment! There were over twenty of us!
Well done Clémence for braving all the weather and making it to the end of the walk! You look magnificent with the Eiffel Tower behind you.
Bravo Neïa for being so strong and proud to hold the Vaillants sign for this walk, you're so cute.
Bravo Alice for taking the march all the way to the metro and the trunk of your car! We'll keep talking about the march in Rouen.
To all you Vaillants, we've been thinking of you!
Thank you Alliance Maladies Rares.
It was an intense day! A 1st Cross Solidaire for the association and the 12th for the Sacré Coeur and Ange Gardien schools and college in Domfront!
It will remain a vibrant memory and a support that will benefit Les Vaillants for a long time to come.
It was a moment of sharing, commitment, kindness and crazy warmth!
We formed a whole around the Vaillants, and their three little representatives of the day, Neia, Elsa and Alice.
Neia's family is originally from the region, so she was incredible! Thank you 🧡💛💙
They did it! They achieved the incredible! More than 9,000 euros!!!
Cross Solidarity October 13, 2023 - School and college of the Sacred Heart and school of the Guardian Angel - Domfront (Orne)
A huge bravo, a huge thank you! And these words are very weak!
Thank you to the students, teachers, families, friends, individuals and professionals… thank you for this crazy mobilization! 💚💜❤️
A special thought to Azéline who worked so that we could benefit from this incredible opportunity: "without you, nothing would have been so strong, so true, so incredible!" 🧡💚❤️
Sincerely, words fail to express our infinite gratitude. To all of you mobilized for us, to the Vaillants
To the association Les Extra-Vaillants MYT1L
