Ana grew up in the Dominican Republic, and in response to the critical needs for access to medication, diagnosis, treatment, and education for those with FA there, she established Un Corazon por Fanconi in 2018.
Through this organization, she facilitates a supportive WhatsApp group for more than 73 families impacted by FA from 12 countries in Latin America. She uses her graphic design background to create educational materials in Spanish, and organizes virtual, educational sessions for the Latin American FA community.
While serving on FARF’s Adult Council from 2020-2022, Ana helped plan and execute two meetings for Adults with FA (while keeping the international voice at the forefront of planning) and participated on the FARF diversity, equity, and inclusion committee. In addition, she is the recipient of two FA international grant awards, and acts as a representative for the Latin American FA community at the annual International Summit.
Last year, Ana and her husband welcomed their beautiful daughter, Violeta, to the world. As Ana embraces motherhood, she continues to strengthen FA community support and advance awareness among the medical community in Latin America.
She plans to use the award to do just this. “I know how important it is to educate doctors about the different characteristics, diagnosis, risks, and treatment of the disease because this education leads to more efficient and successful treatments for our Dominican patients. In addition, raising awareness in the medical community helps us to identify more patients,” Ana explains.
Ana’s leadership in the Spanish-speaking FA community, as well as her efforts to educate more doctors about FA in the Dominican Republic, exemplify the spirit of the Amy Winn and Christopher T. Byrd Award for Adults with FA. Thank you, Ana!