FAST Global Highlight - France
Anthony Moisan and Charlotte Préstat are the parents of Heloïse, 6 y.o., who lives with Angelman syndrome. They both have an educational background in science. Shortly after the diagnosis of their daughter, they had the idea that scientific research can improve the daily lives of AS patients. However at that time, there was no association or group of parents sharing the same belief about scientific research in France. Their daughter’s neuro-pediatrician introduced them to Julien De Bournet, board member of FAST UK, French and father of Calixte, who also lives with AS.
In 2018, Anthony and Charlotte attended their first FAST Scientific Summit & Gala and the incredible positivity, sheer engagement and hope of the scientists, pharma companies and community had blown them away.
It wasn’t long after that in 2019, FAST France was formed.
The 3 key objectives of FAST France are:
- Communicate in French around research on Angelman syndrome.
- One of the first priorities of FAST France is to provide families and professionals with information in French on AS genetic mechanisms and on ongoing scientific research. Most (not to say all) of the scientific research is published in English.
- Coordinate the actors: scientists, practitioners, pharmaceutical and biotechnology laboratories, institutional organizations.
- The priority at the moment is to promote implementation of investigational centers for clinical trials in France in order to accelerate the distribution in France and Europe of promising emerging therapeutic treatments. This requires a number of prerequisites and significant work: identifying and attracting hospital centers capable of implementing innovative therapies, convincing laboratories and/or biotechnologies of our ability to carry out more or less complex clinical trial protocols, work upstream also on French translations of scales or protocols. FAST France has the great privilege to closely collaborate with Professor Bahi-Buisson, neuro-pediatrician at Necker-enfants malades Hospital in Paris, since 2020. She has been a key player in creating this bond with pharmaceutical and biotechnology laboratories. Thanks to her engagement, France will hopefully soon welcome clinical trials. Also, one of the key milestones of FAST France was to leverage data & business intelligence to create a mapping of the Angelman community in France, which is critical information required for a clinical trial.
- Mobilize private and public funding.
- In order to advance ongoing research and allow the launch of programs to meet the country’s needs. FAST France will fundraise in order to support the FAST programs. Similar to FAST USA, CAN initiatives are now running.
FAST France is honored to collaborate with the FAST Global organizations around the world as we work together to cure Angelman syndrome.
Anthony Moisan (Co-chairperson) | Charlotte Préstat (Co-chairperson) | Samantha Eisenhauer | Ariane Lefranc | Stevy Lefranc | Laure Préstat
Scientific Advisory: Professor Nadia Bahi-Buisson