A Rare person inspiring the rare!

By Alex, Osteogenesis imperfecta type 1, Brazil, February 21, 2020

Never give up!!!!

The “gaucho” Alex is one of the most famous persons with Rare Disease and Deafblind Persons in the world. Specialist in Special Education by the UFSM/RS. He was the first Deafblind Person and Person with Hydrocephalus and Rare Disease (Osteogenesis Imperfecta Type 1) to finish a post graduation degree at a Brazilian university.

He is the founder of the Gaucha Association of Parents and Friends of Deafblind people and people with Multiple Disabilities - AGAPASM. He is the pioneer in Brazil who developed the first research to find Deafblind people all over the state of Rio Grande do Sul. And he had as one of the most important supporters the Swedish Federation of Deafblind persons and the World Federation of Deafblind. He is considered "the father" of Deafblindness in the state of Rio Grande do Sul. Since 2004, as a volunteer, he structured for the first time in Brazil a programme of Home Care with families of Deafblind people to help them with information and educational orientation and also medical and social referrals, training of professionals to attend Deafblind people in their original places, adapting theses places and special programmes in schools. Writer: he is the first Deafblind Person to write a book about education in Latin America. His book "Deafblindness: empirical and scientific" was published in 2008. In 2010, he has published a book for children: "The big revolution". He has never given up of his sovereignty, and so he is registered at the National Library as individual editor - Editorial Prefix 908690. In 2009 he won the "Sentidos" Award, a national award, because of his overcoming story of life chosen as the biggest of the year in Brazil. He is a Honorary Rotarian - Rotary Club of São Luiz Gonzaga in the state of RS. He was the first Deafblind Person to be alumni at the Mobility International Programme in the USA in 27 years of history of this organization. He was the first Deafblind Person in Brazil and Latin America to participate of a training programme for teachers with total liberty and it was held in the city of Cuiabá, in the state of MT. He was also the first Deafblind Person in Brazil and Latin America to work in a training programme for teachers with total liberty and where he had as students two people with disabilities (a young blind educator and a young deaf educator). This was held in the city of Niteroi, in the state of Rio de Janeiro. Alex also writes for the Magazine Reação.

Alex was the only Deafblind Person in the world to participate of the High Level Meeting on Disability and Development "The way forward: Disability Inclusive Development Agenda for 2015 and Beyond" held in 2013 at the UN headquarters in New York. He was the proponent in 2013, of the public hearing to treat social inclusion of the people with deafblindness - the first hearing to deal with the issue in the history of Brazil. He is active, participant and collaborator of the IDA Forum - International Disability Alliance (IDA). He is a collaborator of the Secretariat for the Convention on Human Rights of People with Disabilities, Division of Politics and Social Development, United Nations Department of Economic and Social 

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