After a group of families from Latin America met at FAST’s 2019 Global Science Summit and saw the need to create a strong organization in the region, FAST LatAm was formed the following May. We recognized similar characteristics among Angelman syndrome families in our countries such as language barriers, lack of information, and many families who are impacted by social-economic characteristics of our developing countries (low income, poor health care systems, etc.)
FAST LatAm is the organization that is preparing for future clinical trials while creating awareness about AS. We address the daily and most urgent needs of families and patients in the region. At the same time, it is the organization that is offering valuable information about the condition in Spanish. Parents and volunteers of the organization are driven by a passion for making a positive change in Latin America.
FAST Argentina (formerly Casa Angelman), FAST Colombia (formerly Fundacion Angelman Colombia), and FAST Chile are each FAST Global organizations that have combined efforts into FAST LatAm. FAST LatAm supports families in all Spanish-speaking countries of the region. There are numerous parents in the region whose leadership and commitment allow us to build networks, organize families, and unite together as a community.
FAST LatAm has been working with a group of physicians and researchers (many are part of our Scientific Advisory Board) to start our main project, an Observational Cross Section Study in the region to further our main goal of laying the groundwork for future clinical trials in LatAm. We are working towards having Angelman clinics with a team of experts for care and treatment of AS. Thanks to a grant from FAST USA, FAST LatAm has started a free diagnosis campaign for low-income families. At the same time, we offer a series of conferences to families about different aspects of the syndrome, from AAC (alternative augmentative communication), epilepsy and effective school inclusion to science and clinical trials. We continued Casa Angelman’s legacy through Programa Casa Angelman, an online personalized program that links families and professionals to help patients and their caregivers address their most necessary daily needs.
Being able to work locally in Latin America with FAST USA’s support helps us have more visibility on a local level, which also contributes and promotes the global reach of FAST and awareness of AS. We are passionate, excited and hopeful to be a part of a CURE for AS.
Stephanie Azout-Chaki (Chair) | Yoselin Gotschlich (Chile) | Maxie Aubi (Argentina) | Marcela Saldarriaga (Colombia) | Isabel Orellana (Guatemala) | Cynthia Katz (Mexico) | Melina Klurfan (Scientific Director)