FAST is proud to announce the newest addition to its global family: FAST France.
Charlotte Prestat and Anthony Moisan, the founders of FAST France, have three children. After receiving a diagnosis of Angelman syndrome in 2017 for their middle daughter Héloïse, the two science-minded engineers researched as much as they could on the syndrome. Their research led them to the 2018 FAST Summit & Gala in Chicago, IL. Between the contagious enthusiasm of the other families and FAST's focus on science and research to find a cure, the couple was convinced they wanted to join FAST's mission. They approached Paula Evans that weekend about starting FAST France.
Forming FAST France was an arduous process, but Charlotte and Anthony persevered because they know how important it is to have a local Angelman community of clinicians, researchers and families committed to bringing treatments for people with Angelman syndrome to France.
FAST France has three main goals:
- Inform the French speaking community about Angelman syndrome.
- Unite the different players (doctors, scientists, researchers, pharmaceutical companies, biotech companies, institutions) in France and across Europe in preparation for hosting clinical trials.
- Mobilize private and public funding in order to move research and treatments forward in France and Europe in conjunction with FAST.
Since its inception in 2019, FAST France has taken on several ambitious and essential projects. FAST France has formed partnerships with the renowned Necker Hospital and Imagine Institute, both located in Paris. By forming these partnerships, FAST France hopes to attract international pharmaceutical and biotech companies that are currently working to treat Angelman syndrome, in order to organize clinical trials in France. Necker Hospital and Imagine Institute have both the clinical experts as well as the infrastructure to hold fully comprehensive clinical trials for Angelman syndrome.
Two of the clinical experts at Necker Hospital are Professor Nadia Bahi-Buisson, M.D., Ph.D. and Professor Noël Garabedian, M.D. Professor Bahi-Buisson is one of the key neuro-pediatricians for Angelman syndrome in France. She is also considered the "go to" doctor for Rett syndrome in France and has extensive experience conducting research and clinical trials. Professor Noël Garabedian is Professor of Otolaryngology and was heading, until recently, the renowned Medical Commission of AP-HP (French Parisian Hospitals). He has a grandson with Angelman syndrome. Professor Garabedian's personal connection allows him to understand the importance of bringing a therapeutic to realization and he is willing to leverage his network in order to facilitate the launch of an investigational center in France.
Imagine Institute is the first European center of research, care and education on genetic diseases. In 2018, there were 580 clinical studies for rare diseases underway, enrolling more than 7,000 patients.
In addition to these partnerships, FAST France has compiled a framework of drug regulations and procedures that are specific to France and the European Union. This is essential in order to conduct clinical trials in Europe.
FAST France is also helping to expand the Global Angelman Registry by assisting FAST Australia, the registry host, in testing and promoting the Registry to the French speaking community. The Registry is a global initiative that collects data on individuals with Angelman syndrome through a series of online surveys and has built the largest and most comprehensive collection of information on Angelman syndrome to date. FAST recognizes the importance of the Global Registry as a worldwide bank of Angelman syndrome knowledge where researchers, scientists, and pharmaceutical companies can go to find parent-reported information on commonalities, seizure patterns, diets, etc. of patients in order to support research and treatments. The French platform is expected soon!
Additionally, and in connection with Duke University, FAST France is working to translate the Observer-Reported Measure of Communication Ability (ORCA) tool. The ORCA measurement tool is a caregiver-reported outcome measure of communication ability to be used with caregivers and parents of children with Angelman syndrome and was developed by Dr. Bryce Reeve. The ORCA study was fully funded by FAST. Dr. Reeve is the Director of the Center for Health Measurement at Duke University School of Medicine; he is also a Professor of Population Health Sciences and Pediatrics.
FUN is also something FAST France knows how do! In order to build awareness and raise funds, the organization will host a yearly music festival called, "UBE3A" on February 15, International Angelman Day. Who is up for Chicago deep-dish pizza in December, followed by French croissants and champagne in February?
Parlez-vous français? On a besoin de vous! Contactez FAST France:
To learn more about FAST France or to get involved locally:
Contact
fastfrancecontact@gmail.com
Follow
http://www.facebook.com/FASTFrance.org
