Update on Progress Around the World from FAST Global

Quick Overview

The FAST Global leaders from various countries provided updates on their progress in the mission to cure Angelman Syndrome. FAST Global consists of representative, country-specific FAST affiliate organizations that work collaboratively to accelerate the mission. Each leader shared the initiatives and projects undertaken in their respective countries, including education, research funding, translation, clinical trial readiness, and natural history studies. They highlighted the importance of collaboration and the need to bring treatments to individuals in as many regions of the world as possible. The leaders expressed gratitude for the support and partnerships that have contributed to their achievements.

Introduction

In this talk, we will provide an update on the progress made by FAST Global, an international foundation dedicated to accelerating the mission to cure Angelman Syndrome. FAST Global consists of representative, country-specific FAST affiliate organizations, working collaboratively to bring treatments to individuals around the world.

FAST Global Leaders

FAST Global has leaders in Australia, the UK, Canada, Italy, France, Spain, and Latin America. Each leader brings talent and expertise to the global team, emphasizing collaboration and sharing across pharmaceuticals, research institutions, and other organizations related to Angelman Syndrome.

Search and Rescue Initiative

FAST Global focuses on various initiatives to accelerate the mission. One of these initiatives is the Search and Rescue Initiative, which aims to bring treatments to individuals in as many regions of the world as possible. This is achieved through education, teamwork, research grant funding, translation, natural history studies, and local clinical trial readiness.

Updates from FAST Global Leaders

Stephanie Azout from FAST LATAM

Stephanie Azout from FAST LATAM shared the progress made by FAST Latin America. The organization was created in 2020 to address the language barrier and lack of information about Angelman Syndrome in Latin America. FAST Latin America works as an umbrella organization with official organizations in Argentina, Chile, Guatemala, Colombia, and Mexico. They focus on engaging with families, professionals, physicians, researchers, and pharma companies to advocate for Angelman Syndrome. Their main objectives include laying the groundwork for future clinical trials, providing information in Spanish, and addressing the urgent needs of families with Angelman Syndrome.

Domingo Delgado from FAST Spain

Domingo Delgado, the chairperson for FAST Spain, shared the journey of creating FAST Spain in 2020. The organization aims to bring hope and a path towards a cure for Angelman Syndrome in Spain. They have raised funds and collaborated with hospitals to establish Angelman Syndrome clinics and launch a natural history study. FAST Spain is committed to following the roadmap created by FAST and working towards their goal of curing Angelman Syndrome.

Charlotte Prestat from FAST France

Charlotte Prestat, representing FAST France, discussed the importance of educating the French community about Angelman Syndrome. FAST France was established in 2019 to provide information and raise awareness in French. They have translated videos and materials, organized community events, and funded research projects. Their focus is on bringing clinical trials to France and fundraising to support their mission.

Benedetta Sirtori from FAST Italy

Benedetta Sirtori, one of the founders of FAST Italy, shared the progress made by the organization. FAST Italy was founded in 2017 and focuses on educating the community about the science of Angelman Syndrome. They have translated materials, funded research projects, and established a biorepository in Milan. FAST Italy is dedicated to supporting the FAST mission and collaborating with researchers and pharma companies.

Tom Keogh from FAST UK

Tom Keogh discussed the objectives and achievements of FAST UK. The organization was established in 2016 to raise funds for research, raise awareness about Angelman Syndrome, and support families. They have funded a natural history study, raised awareness through social media and community events, and are planning to hold their own gala in England. FAST UK emphasizes the importance of collaboration and the support they receive from FAST US.

Noah Firestone from FAST Canada

Noah Firestone, the chair of FAST Canada, highlighted the fundraising efforts and research projects of the organization. FAST Canada raises funds to support the FAST mission and collaborates with FAST US to co-fund research projects. They have funded a natural history study, supported clinical trials, and provided opportunities for Canadian families to attend the FAST Scientific Summit and Gala. FAST Canada is committed to making a meaningful impact in the fight to cure Angelman Syndrome.

Meagan Cross from FAST Australia

Meagan Cross provided an update on the initiatives of FAST Australia. The organization focuses on raising awareness, supporting families, and funding research. They hold conferences, raise funds through initiatives like Move for a Cure, and collaborate with other organizations. FAST Australia has contributed to the Global Angelman Syndrome Registry, conducted research on caregiver burden, and established a chromosome 15 biobank.

Conclusion

The progress made by FAST Global and its affiliate organizations is commendable. Through collaboration, fundraising, education, and research, they are working towards the mission to cure Angelman Syndrome. The dedication and efforts of these organizations and their leaders are bringing hope to families around the world.