Reinforcing The Global Struggle Against Huntington’S Disease: A View To Brazil Too A Reminder Of Our Mutual Struggles
The global cooperation necessary to defeat Huntington’s illness requires the bridging of cultural divides. It entails recognition of each country’s unique needs too contributions – but also of the mutual struggles involved.
With this inward mind, final calendar month I embarked on some other stage of my ain international advocacy past times traveling to Brazil, the set down I have got studied since 1986, to deliver a spoken language on hard disk too construct novel connections for the cause.
The world’s 5th most populous country, with over 190 1 K one thousand people, Brazil occupies a pregnant identify on the world’s hard disk map. Perhaps 19,000-plus Brazilians endure from the disease, too tens of thousands are at risk.
Thus, in 1 trial the global hard disk clinical trial too interrogation study platform known equally Enroll-HD gets under agency inward Brazil, the country’s potential contributions to the search for effective treatments volition increase substantially (click here to read more).
A ‘bi-cultural’ perspective
As I have got done almost every twelvemonth over the past times iii decades, I visited Brazil primarily to run on my ongoing research inward Brazilian history. In all, I have got spent nearly 7 years there. In 1991, during my Ph.D. interrogation inward Rio de Janeiro, I met my married adult woman Regina.
Brazil is my minute home. I refer to myself equally “bi-cultural.”
Even before I joined the board of the San Diego chapter of the Huntington’s Disease Society of America inward 1998, I established contact with Brazilian hard disk activists who founded the Associação Brasil Huntington (ABH) inward 1997.
As a carrier of the hard disk genetic defect, I spoke inward 2013 most my personal strategies for avoiding attack of symptoms at the 6th World Congress on Huntington’s Disease, held inward Rio (click here too here to read more).
Gene Veritas (aka Kenneth Serbin) at Ipanema beach inward Rio de Janeiro (photo past times Regina Serbin)
Combating genetic discrimination
During this most recent trip, I advocated for HD-related issues inward my meetings with political leaders.
In 2005, the Brazilian Senate passed a nib protecting citizens against genetic discrimination. However, the Câmara dos Deputados (the House of Representatives), has nonetheless to accept upwards the matter. Until then, the nib cannot go law.
Senator Aloysio Nunes Ferreira Filho, who ran for vice president inward the 2014 election on the losing ticket of the opposition Brazilian Social Democracy Party, supports the legislation. During my see to his constituent inward Brasília, the capital, he phoned a colleague inward the Câmara to urge activeness on the bill.
Senator Aloysio Nunes Ferreira Filho (above, photograph past times Gene Veritas) too Gene Veritas inward the bedroom of the Senado Federal inward Brasília (below, photograph past times Lucas Souza)
Defending the rights of the disabled
Later, inward São Paulo, South America’s largest industrial too fiscal hub, I attended a presentation past times the famous liberation theologian Leonardo Boff about the geopolitical province of the world, the threat to the global environment, too the current political crisis inward Brazil.
The trial was moderated past times Paulo de Tarso Vannuchi, who served equally Minister of the Special Secretariat for Human Rights from 2005-2011 inward the regime of the ruling Workers’ Party.
Vannuchi briefly introduced me to leaders of the National Council for the Rights of the Disabled. I committed to furnish them with data most hard disk too pose them inward touching with the ABH.
Vannuchi told the audience of 60, which included clergy too grassroots social activists, of my hard disk advocacy too suggested that the reporters nowadays interview me.
Paulo Vannuchi, quondam Minister of the Special Secretariat for Human Rights (photo past times Gene Veritas)
That same solar daytime I gave an interview to the TVT telly outlet commenting on the importance of Boff’s speech. (You tin reckon the study on the event, including my commentary, past times clicking here).
Shortly later my furnish from Brazil on July 22, 1 of the reporters nowadays at the event, São Paulo-based radio broadcaster Marilu Cabañas, interviewed me via telephone most hard disk for her program. Shocked to listen of police detentions of HD-affected individuals inward both Brazil too the USA because of ignorance most the disease, she headlined her report with that fact.
Bioethical challenges
I gave my speech, “Huntington’s Disease, Bioethics, too the Promise of Biotechnology,” on July twenty at the Universidade Candido Mendes (UCAM) inward downtown Rio de Janeiro.
I have got known the rector, Candido Mendes, for to a greater extent than than twenty years. My friends too colleagues, UCAM Professor Luiz Alberto Gómez de Souza too his married adult woman Lúcia Ribeiro, both leading scholars too grassroots activists of the Catholic Church, organized the event. (Brazil is the world’s largest Catholic country.)
During my hour-long presentation inward Portuguese, I recalled my family’s long struggle against HD, offset with my mother’s diagnosis inward 1995, followed past times positive exam for the genetic defect inward 1999 too the wrenching sense of testing our miss Bianca inward the womb inward early on 2000.
I felt deep relief later showing the audience pictures of our HD-free “miracle baby” inward activeness equally a youth soccer player. I spoke of the “double luck” nosotros currently savor: Bianca volition never confront the terrible threat of juvenile HD, too I stay symptom-free despite having long passed my mother’s historic catamenia of onset.
“At 55, my woman raise […] could no longer drive, she couldn’t work, she couldn't talk,” I said. “By a huge stroke of luck, I am healthy. Each solar daytime is a blessing.”
However, I also pointed to the many other bioethical challenges faced past times hard disk families, including discrimination, theater unit of measurement too caregiver stress, fiscal burden, too the lack of adequate facilities too caregiving personnel for late-stage patients.
The room became real serenity equally I related how Carol Carr (of Georgia) inward 2002 took a gun to the nursing abode where her ii HD-stricken sons lay helpless inward bed too shot them dead to forestall farther suffering. Carr spent nearly ii years inward prison.
“That was extremely wretched for our community,” I recalled. “Huntington’s illness is non something slowly to speak about.”
With no effective treatments, such was the aeroplane of hopelessness that has plagued the hard disk community, I had pointed out earlier.
The hope of clinical trials
“But I came to Brazil non to speak but most sadness,” I continued. “I also came to speak most hope too the hope of biotechnological research.”
The scenario for the hard disk community has changing radically inward recent years with major advances inward interrogation too the advent of clinical trials to exam potential remedies, I said.
I spoke of the immense potential revealed inward the annunciation final twelvemonth of the gene-silencing clinical trial past times Isis Pharmaceuticals, Inc. Citing an electronic mail from Isis executive Frank Bennett, Ph.D., received the solar daytime before the presentation, I confirmed that the trial would start past times year’s end.
(Indeed, the forenoon after my talk, Isis officially announced that it had commenced the trial.)
You tin sentiment my verbalize inward the video below.
A local commitment to the cause
During the Q & A, several Brazilian HD-affected individuals too caregivers spoke of their many struggles with the disease.
They also expressed excitement most the Isis clinical trial.
Carmen Paiva, Ph.D., spoke of her lab’s run inward hard disk genetic too epidemiological interrogation with Brazilian hard disk families. She told the audience of other local researchers too physicians focusing on the disease.
Recognizing mutual struggles
At the unopen of the session, Prof. Gómez de Souza evoked a fundamental betoken of my presentation: the interconnectedness of neurological illness interrogation too the mutual struggles of the afflicted.
He spoke with profound emotion most his brother, the renowned musician Paulo José Gómez de Souza, who has suffered from Parkinson’s illness for to a greater extent than than ii decades but has successfully strived to go along working.
The struggles are shared with diseases – too with nations.
I hold off forrad to celebrating with my Brazilian relatives too friends the defeat of HD, Parkinson's, too other neurological disorders equally a final result of a really global effort.
I hold off forrad to celebrating with my Brazilian relatives too friends the defeat of HD, Parkinson's, too other neurological disorders equally a final result of a really global effort.
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