A Friend Of The Huntington’S Community Receives Accolade For Hd Article Inwards Influential Brazilian Magazine

Brazilian journalist Mônica Manir, holder of a doctorate inwards bioethics too a long-time friend of the Huntington’s illness community, received the Prêmio Synapsis (Synapsis Prize) for her in-depth Dec 2017 article on the disorder inwards the prestigious Brazilian magazine Piauí.

Titled “Dançando no escuro” (“Dancing inwards the Dark”), the article provides a detailed portrait of HD, focusing on families inwards Brazil too other countries affected past times the condition, which causes involuntary movements, cognitive decline, too psychiatric problems. Piauí is on the story of The New Yorker magazine.

The Prêmio Synapsis is sponsored past times the Brazilian Federation of Hospitals too awarded annually for the best journalistic reports on wellness issues inwards the categories of impress publications, TV, online, too radio.

For her article, Manir did almost v months of reporting, traveling to the interior to see a town amongst a large nucleus of affected families too also to the Vatican inwards May 2017 to witness Pope Francis’ special audience amongst the global hard disk community.

Upon receiving the Prêmio Synapsis inwards Brasília on Nov 27, Manir recalled the pope’s proclamation that hard disk should last “hidden no more!”

Mônica Manir receiving the Prêmio Synapsis (photo past times Federação Brasileira de Hospitais)

Manir received her score inwards journalism at the Universidade de São Paulo (USP), i of Brazil’s leading universities, inwards 1990. She worked equally both a reporter too editor for the Dominicus intelligence too cultural department of the newspaper O Estado de S. Paulo.

In 2013, she reported for the paper on the 6th World Congress on Huntington’s Disease, held inwards Rio de Janeiro. She also ready a beak past times me on HD too bioethics in São Paulo at the Centro Universitário São Camilo’s graduate computer program inwards bioethics, where she received both her Master’s too Ph.D.

She is also doing a post-doctoral study at the USP’s Instituto Oscar Freire on the dilemmas of predictive testing for people at opportunity for HD.

On Dec 5, Manir granted the next interview via e-mail.

GV: What led y'all to study journalism?

MM: I was ever a really curious person. I wanted to empathise the “why” of everything. I ever pestered my parents amongst questions. I also loved reading. When I was 14, my sis started studying literature at the Universidade Estadual de Campinas [in São Paulo state] and became a fellow member of the Círculo create Livro [a bi-weekly mass club]. I couldn’t await to “inherit” from her all of those books that arrived at our house. I also loved writing too was praised for my schoolhouse reports. In middle school, I discovered that the history taught inwards the schools had a political bias. I felt the wool had been pulled over our eyes amongst all of the linguistic communication that permeated the schoolhouse texts too that oft hid the facts. I decided that, past times becoming a journalist, I could endeavour to acquire equally closed equally I could to the truth to assist people go to a greater extent than critical too aware. I wanted to last where things were happening too see all the angles. To create that, I needed to create deeper reporting. That’s why I ever preferred working for media that allowed me to create in-depth reporting.

GV: What inspired y'all to write an article for Piauí about Huntington’s?

MM: Although I already knew nigh the illness because of the article I did for O Estado de S. Paulo in 2013, I was inspired to create the slice for Piauí by the audience amongst the pope at the Vatican. I thought it was a theme appropriate for returning to the subject, right away inwards a to a greater extent than profound way, because I would come upwards into contact amongst the affected, the families, too the wellness professionals from unlike parts of the world.

GV: What did it hateful for y'all to have the Prêmio Synapsis for your article “Dancing inwards the Dark”? Why is the prize called “Synapsis”?

MM: It meant for me a large investment inwards an in-depth article. Just to study it took almost v months, including my trip to the Vatican too to Ervália, a minor town amongst a large enclave of people amongst the illness inwards the province of Minas Gerais, too also the reading of articles too books, too long interviews amongst the affected, household unit of measurement members, specialists, artists. Then came the writing upwards of all that enormous sum of information, the organization of the text, too the fact-checking, too and thus the in conclusion version, which took upwards 7 pages inwards the magazine. According to the sponsors, the refer of the prize is intended to recognize the bright ideas regarding the improvement of Brazil’s wellness system. The term “synapsis” has to create amongst “link,” “connection.”

GV: What did y'all say equally y'all accepted the prize?

MM: I thanked the sponsors for their initiatory inwards stimulating give-and-take nigh the Brazilian wellness system, which is essential inwards a province amongst such social inequality inwards all areas. I also thanked Piauí magazine for having invested inwards a theme withal niggling known, too for having sent me to the Vatican too Ervália to covert unlike angles of the subject. But I peculiarly thanked the HD-affected, their relatives, too the wellness professionals, all of whom bargain amongst prejudice, the difficulties of beingness diagnosed, too the hitches that have got occurred inwards the search for treatments, all of this unfortunately also really mutual inwards other rare diseases. Lastly, I remembered the theme of the audience amongst Pope Francis: “Hidden no more!”

GV: After the ceremony at which y'all received your trophy, many people greeted y'all too said that they had non heard of hard disk but would right away convey an involvement inwards it. What explains this reaction?

MM: I think the fact that a prestigious mag like Piauí took involvement inwards the discipline is already a argue for reading the article. Another quest is that this illness tin sack last acquaint inwards a household unit of measurement or friends without anybody knowing nigh it. Or, fifty-fifty if people know nigh it, they powerfulness lack detailed information. So, there’s curiosity nigh learning to a greater extent than nigh HD. One duad acquaint at the ceremony said that they knew nigh the illness because a relative had symptoms. They called it “Huntington’s chorea,” equally it is withal sometimes known inwards Brazil, too praised the fact that the mag had addressed the subject.

GV: It’s been a twelvemonth since the publication of “Dancing inwards the Darkness.” Beyond your prize, what has been the article’s impact inwards Brazil?

MM: When it was published, it drew praise from diverse quarters, from story doormen to Brazilian celebrities, likewise the subjects themselves.

GV: What was it similar to covert the affected families inwards Rome inwards May 2017?

MM: It was a really rich experience! I understood much ameliorate the anguish of the families, the factors that accentuated or eased that anguish, too the decision to diminish the quiet on the matter. Everybody was really sort to me, answering patiently my endless questions!

GV: What led y'all to study bioethics?

MM: I think bioethics combines perfectly amongst journalism inwards the feel that the guiding concept is “it depends.” Central questions of human existence can’t last viewed only from i angle. It’s necessary to plough the prism too detect the effects that has on the light. It’s necessary to empathise the context of a matter, people’s wishes, the internal too external pressures, and, from that point, endeavour to register things amongst sensitivity. Bioethics showed – too continues to demonstrate – me the profound dilemmas of life too expiry that are withal far from beingness answered amongst a unmarried response. 

GV: What has most impacted y'all regarding Huntington’s?

MM: Huntington’s is a hereditary illness that leaves families on hold. Questions hang over them: “Do I acquit the gene? Does my child? And my mother? And my nephew?” Despite the existence of a predictive test, really few undergo testing to larn their status earlier the actual onrush of symptoms – which is completely understandable, because at that spot is withal no cure. At the same time, at that spot are cutting-edge enquiry projects that could block the genetic trigger and, equally a result, assist to process and/or cure this too other diseases.

GV: What message would y'all similar to transmit to the Huntington’s community inwards Brazil? And beyond?

MM: I would similar to say that I empathise really good all of the suffering encompassing the illness too how, sometimes, people experience similar hiding it inwards the closet. But I think the prize confirms the primary quest of the papal audience: nosotros must speak nigh Huntington’s. Shedding low-cal on things hurts. However, it helps to brand people aware of alternatives too of the partners to last flora on this journey. The illness does non impact my family, but my empathy – too that of thus many other individuals – is non a interrogation of blood, but of soul. I’m amongst you!

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