It’s a Small World: Why FAST Is Global
The FAST Global team, consisting of chapters from various countries, discussed their challenges and ambitions at the 2023 FAST Science Summit. Challenges included fundraising, reaching pharmaceutical companies, and regulatory barriers. Ambitions for the coming year included expanding involvement and participation, funding new projects, spreading awareness and engagement, and conducting clinical trials and studies. The team also announced plans for a Latin American Angelman Congress in Colombia in 2024. Attendees were encouraged to connect with the team for further discussions and support.
In this talk, we will explore the global reach of FAST (Foundation for Angelman Syndrome Therapeutics) and the challenges faced by its chapters around the world. We will also discuss the ambitions of each chapter for the coming year.
The Growth of FAST Global
FAST Global has been expanding rapidly, with chapters in various countries and regions. The incredible work done by these chapters is truly awe-inspiring. Last year, during the FAST Science Summit, the chapters showcased their accomplishments and the projects they have been working on.
To support the growing global network, FAST headquarters has recently welcomed a new staff member, Ellen Koekoeckx, as the Global Advisor. Ellen brings over 10 years of experience in the pharmaceutical industry and is eager to collaborate with the FAST chapters to address the unique challenges faced by each country and region.
Challenges Faced by FAST Global Chapters
During the summit, the chapter leads from different countries shared their biggest challenges from the past year. These challenges varied from reaching pharmaceutical companies and overcoming regulatory barriers in Latin America to increasing awareness among physicians and geneticists, and finding and engaging more families in the community.
In France, the biggest challenge was successfully setting up and running clinical trials while navigating local requirements such as ethics committees and regulatory compliance. In Poland, the challenge was to establish FAST Poland and advocate for the Polish community. In the UK, the focus was on expanding the reach of FAST and engaging with regulatory bodies. Australia faced the difficulty of educating and reaching people in a vast and sparsely populated country. Italy’s challenges included educating families and clinicians about Angelman syndrome and finding newly diagnosed children. In Canada, the challenge was to effectively allocate funds raised and overcome regulatory and funding obstacles.
Ambitions for the Coming Year
Looking ahead, each FAST chapter has set ambitious goals for the coming year. In Canada, the aim is to involve more people from different regions and communities in FAST activities. In France, the focus is on establishing a Fast Friends Scientific Advisory Board and conducting studies on meaningful endpoints for Europe. Poland aims to strengthen the Polish community and collaborate with clinicians to bring clinical trials to the country. The UK is determined to expand its reach, engage with regulatory bodies, and gather more data. Latin American chapters aspire to unite every country in the region, conduct observational studies, and potentially become sites for future clinical trials. Argentina plans to carry out basic research and launch a newborn screening pilot program. Additionally, a Latin American Angelman Congress will be held in Colombia in 2024.
The global reach of FAST is a testament to the dedication and hard work of its chapters around the world. By addressing region-specific challenges while also working together to solve common problems, FAST is making significant progress towards its mission of finding a cure for Angelman syndrome. The ambitions of each chapter for the coming year reflect their commitment to making a difference in their respective countries and regions.
- Title: It’s a Small World: Why FAST Is Global
- Author(s): Alana Newhouse
- Author(s)’ affiliation: FAST
- Publication date: 2023-11-12
- Collection: 2023 FAST Science Summit