FAST LatAm Seeks to Improve Care in Latin America

FAST LatAm Seeks to Improve Care in Latin America
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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.

FAST Colombia replaces Fundación Angelman Colombia, and Casa Angelman is becoming FAST Argentina. There also are conversations with FAST about establishing operations in Chile and Mexico.

“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.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
Total Posts: 11
Ana holds a PhD in Immunology from the University of Lisbon and worked as a postdoctoral researcher at Instituto de Medicina Molecular (iMM) in Lisbon, Portugal. She graduated with a BSc in Genetics from the University of Newcastle and received a Masters in Biomolecular Archaeology from the University of Manchester, England. After leaving the lab to pursue a career in Science Communication, she served as the Director of Science Communication at iMM.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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