The establishment of Foundation for Angelman Syndrome Therapeutics (FAST) operations in Latin America is expected to improve the quality of life for the roughly 42,000 people in that region who are living with Angelman syndrome (AS).
FAST Latin America (FAST LatAm) has become the regional umbrella for the newly formed FAST Colombia and FAST Argentina, which join affiliates in the United States, Australia, Canada, France, Italy, Spain, and the United Kingdom. FAST is the largest non-governmental founder of Angelman research.
“Being able to work in Latin America as FAST Argentina and FAST Colombia will help us have more visibility on a local level,” according to a joint statement from FAST Columbia and Argentina.
In addition to an overall enhanced quality of life for Angelman patients and families, the mission of FAST LatAM is to: help guide newly diagnosed patients; provide genetic counseling and therapeutic guidance; and to offer information in Spanish about clinical trials, treatment candidates, and FAST-funded scientific achievements.
FAST LatAm also will try to add every Angelman patient in the region to the Global Angelman Syndrome Registry. It intends to create a virtual medical and therapeutic consultation team for parents and medical professionals. The team would help guide creation of regional Angelman syndrome Centers for Excellence that would help heighten awareness of Angelman and treatment options in area hospitals. Such clinics also could help lure clinical trials to the region.
Of the approximately 42,000 Angelman patients in Latin America — a figure based on the region’s population and the disease’s prevalence — only about 1,600 have been formally diagnosed.
“Many families in Latin America share the same socioeconomic challenges of low income, poor access to quality health care, lack of education, and little to no support for individuals with Angelman syndrome,” said Maxi Aubi, Casa Angelman director. “This is something we have worked hard on for the last 13 years to change, both in Argentina and throughout our region and even the world.”
FAST LatAm came about after Aubi and Melina Klurfan, a genetic counselor in Buenos Aires who has worked at Casa Angelman since 2015, attended their first FAST Summit & Gala two years ago. Due to the COVID-19 pandemic, Casa Angelman recently transitioned to virtual operations.
“The science summit in particular renewed our hopes for an effective therapeutic for Angelman syndrome, and we began thinking of how we could prepare our networks o receive clinical trials and treatments,” Aubi said. “We wanted to transition into becoming FAST Argentina because we believe so fully in FAST’s mission of curing Angelman syndrome.”
After the summit, Aubi and Klurfan began talking with mothers of Angelman patients in Latin America to gauge interest in starting FAST LatAm.
“There is an urgent need to join forces, efforts, and resources,” Klurfan said. “Experience has shown us that working alone is not as effective as working together.”
Following discussions with FAST in the U.S., Aubi, Klurfan, and Angelman parent Marcella Saldarriaga decided to establish FAST operations in Colombia and Argentina. Saldarriaga is the founder of Fundación Angelman Colombia.
“Working as a team will help us make a big impact in Latin America,” Klurfan said.
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