---------- Mensagem encaminhada ---------De: Nathlia Kneipp <nkneippsena@gmail.

com> Data: 17 de abril de 2013 10:13 Assunto: inclua as doenas prinicas em sua agenda de pesquisa Para: nicoleli@neuro.duke.edu, lebedev@neuro.duke.edu, oliveira@neuro.duke.edu, shankri.r@gmail.com, thomson@neuro.duke.edu, vieira@neuro.duke.edu, peter.ifft@duke.edu Cc: cjdvoice@yahoogroups.com

Prezado Prof. Nicolelis e equipe, Assunto: Por favor, inclua as doenas prinicas em sua agenda de pesquisa Espero que esta os encontre bem. Hoje, na Inglaterra, famlias de vtimas da vDCJ faro um protesto simblico junto ao tmulo de seus entes queridos, ceifados precocemente por essa doena. A ocasio o funeral de Margaret Thatcher a quem reprovam os atos administrativos enquanto primeira-ministra, considerando-a cmplice na disseminao da encefalopatia espongiforme transmissvel, poca em que a "doena da vaca louca" ganhou amplo destaque na imprensa. O que ns, brasileiros, temos com isso? Embora o Ministrio da Sade diga em seu site que desde 1994 no h incidncia da DCJ no pas, uma pesquisa que realizei sobre o tema ( https://bitly.com/SWfcKb) demonstra que sim, temos essa doena com uma frequncia bem superior a que est sendo anunciada pela vigilncia epidemiolgica, muitas vezes com diagnstico equivocado de Alzheimer, como ocorreu com minha me, falecida no ms passado aps uma tenebrosa tortura, causada pela EET. Sei que muitas famlias devem escrever para o senhor com a esperana de que seus projetos sejam concludos com sucesso e possam oferecer resultados para o tratamento de vrias doenas neurodegenerativas. Hoje, escrevo-lhe em solidariedade a todas as famlias que tiveram o infortnio de serem devastadas pela Doena de Creutzfeldt-Jakob para pedir que some esforos queles que pesquisam sobre as EETs e Alzheimer. No Brasil, comum ouvir o comentrio: graas a Deus, no vrus nem bactria, inexiste a possibilidade de contgio! ao ouvirem o veredito de que a pessoa tem uma doena prinica, sentenciada morte. Mal sabem que existe a possibilidade de transmisso da doena por diferentes vias de contgio. Esto alheios aos achados de Daniel Carleton Gajduseck, pediatra, antroplogo e virologista, sobre a incidncia da doena conhecida 1

como Kuru na Papua-Nova Guin e ao trabalho do especialista em radiao Tikvah Alper e do matemtico ingls John Stanley Griffith, que em 1967 conceberam a hiptese de o modelo de transmisso dessa doena ser realizado s por partculas de protena com a capacidade de modificar outras protenas encontradas no organismo. Depois de 15 anos dessa suposio, Stanley Prusiner usou o termo pron para descrever essa partcula de protena infecciosa. O primeiro e o ltimo foram premiados com o Nobel pelos respectivos trabalhos. A Revista Science esperou mais de seis meses antes de publicar o trabalho de Prusiner, com receio de que fosse loucura. Crticas e questionamentos sobre essas hipteses continuam a fazer a cincia avanar, mas a teoria sobre o pron prevalece nos dias atuais e nesse polilquio da cincia que gostaria que sua equipe estivesse presente pois aqueles que esto desvendando os mistrios do crebro tm melhores chances de desvendar os mistrios de como combater os prons, doenas como a DCJ, Alzheimer, Parkinson, entre outras. Em Natal (RN), cidade escolhida para a implantao do Instituto Internacional de Neurocincias de Natal, desde 2006 houve 6 casos de DCJ e, em 2011, um potiguar de 42 anos, e uma carioca de 31 anos, que morava nessa cidade h apenas um ano, foram internados com o intervalo de um ms entre as admisses no Hospital Universitrio Onofre Lopes, ambos vitimados pela DCJ. Essas duas pessoas no tinham vnculo de parentesco nem se conheciam. As autoridades apontaram "uma mutao gentica" como provvel causa da doena e anunciaram que a necropsia no deveria ser realizada em ambos os casos para evitar o contgio. Minha me tambm teve sua necropsia negada pelas autoridades de Braslia (DF) com a mesma justificativa de que quem a realizasse estaria colocando a si e a seus colaboradores em risco de contrair a doena. Em relao s EETs, estamos em plena Idade Mdia no Brasil, no que se refere compreenso da doena e elaborao de polticas pblicas para enfrent-la nos Estados. So Paulo permanece como a exceo, onde se concentram os recursos financeiros e humanos. No Rio de Janeiro h vrios casos, o mais recente foi o de Adlia Amorim, 69, cuja internao foi negada por muitos hospitais: http://oglobo.globo.com/rio/ancelmo/posts/2013/02/21/suspeita-demal-da-vaca-louca-assusta-cidade-do-rio-487100.asp

Gostaria que sua equipe interagisse com o grupo de Johannes Hayabaeck, que demonstrou que os prions podem ser transmitidos pelo ar; o grupo de Claudio Soto, que, ao enxertar o tecido cerebral de uma pessoa com diagnstico confirmado de Alzheimer em ratos, fizeram com que esses desenvolvessem o mesmo padro da doena com o acmulo de placas de protena beta-amilide no crebro; John Collinge e Emmanuel Asante, que conseguiram provar, com o uso de cobaias, que os prons da encefalopatia espongiforme bovina (mal da vaca louca) se propagam como DCJnv e tambm DCJe, permitindo a concluso de que h casos de DCJe que podem ser resultado de consumo de carne de gado contaminado por BSE ou outra doena prinica do gado e qui via scrapie de outros animais. Eis dois recortes de jornal que indicam que a cincia, especialmente a brasileira, no est negociando o saber a 2

partir das perguntas necessrias:

"O scrapie foi introduzido no Brasil pela importao de ovinos da raa Hampshire Down de rebanhos ingleses em 1978. Desde ento, devido poltica de importao de ovinos da Europa ou mais recentemente da Amrica do Norte (Canad / USA), foram registrados sete surtos da doena ocorridos nos estados do Paran e Rio Grande do Sul (RS). Os dois ltimos casos da doena envolveram ovinos criados no MS e RS. At 2001, a doena foi registrada em ovinos importados. O que preocupa que os registros de scrapie de 2003 (PR) e os dois registrados em 2006 foram em ovinos nascidos no Brasil, o que sugere que essa enfermidade no pode ser mais considerada extica em nosso rebanho."

Os ovinos com scrapie podem ser uma fonte de contaminao para aqueles que contraram DCJ no pas?

"Em dezembro de 2012, o governo confirmou a identificao do agente causador do mal da vaca louca num animal que morreu no Paran em 2010. O governo defende que o caso foi isolado e no foi suficiente para alterar a classificao de risco da carne brasileira. Portanto, as decises de restringir as importaes so vistas como medidas protecionistas pelo Brasil. Japo, frica do Sul, Coreia do Sul, Taiwan e China deixaram de importar todos os produtos brasileiros, animais vivos ou carne bovina congelada. O Peru adotou a mesma medida, por 90 dias. Jordnia e Lbano aplicaram a restrio apenas para a carne vinda do Paran. A Arbia Saudita s comprar carne vinda do Par. J o Chile deixou de comprar farelos de osso e de carne."

Como pode o Brasil levar quase dois anos para ter o exame laboratorial de confirmao da existncia do pron nesse animal? Como possvel que as necropsias sejam negadas em seres humanos com EET? Quem est cuidando da desinfeco do instrumental cirrgico para evitar a propagao de doenas como essa?

preciso que a comunidade cientfica veja a questo das doenas prinicas alm da perspectiva de lucro com patente de remdios. A discusso deve partir do princpio de que estamos todos sujeitos a contrair essa doena, caso o descaso persista. Escrevo ao seu 3

grupo com essa esperana de que incluam as doenas prinicas em sua agenda de pesquisa. Por favor, participem desse debate, j que vem a cincia como instrumento de transformao social.

Agradeo a ateno e desejo-lhes sucesso nas pesquisas que conduzem.

Nathlia Kneipp

___________________________________________________________________________ ______

Google translator version. Sorry but I dont have time to do a decent translation job right now:

Dear Prof. Nicolelis and team

Subject: Please include prion disease in your research agenda

I hope this finds you well.

Today in England, families of victims of vCJD will make a symbolic protest at the grave of their loved ones, harvested early by this disease. The occasion is Margaret Thatchers funeral who disapprove administrative acts as prime minister, considering it complicit in the spread of transmissible spongiform encephalopathy, a time when the "mad cow disease" has gained widespread press coverage. What we Brazilians have with it? Although the Ministry of Health says on its website that since 1994 there is no incidence of CJD in the country, I conducted a research on the topic (https://bitly.com/SWfcKb) shows that yes, we have this disease with a frequency much higher than it is being advertised by epidemiological surveillance, often with misdiagnosis of Alzheimer's, as did my mother, who died last month after a dreadful torture caused by TSE. I know that many families will write to you with the hope that your projects are completed successfully and can provide results for the treatment of various neurodegenerative diseases. Today, I write to you in solidarity to all the families who had the misfortune of being devastated by the Creutzfeldt-Jakob Disease. I urge you to join your efforts with all research groups that are studying TSEs and Alzheimer's Disease.

In Brazil, it is common to hear the comment, "thank God, is not a virus or bacteria, the possibility of contagion does not exist!" Upon hearing the verdict that the person has a prion disease, sentenced to death. Hardly know that there is the possibility of disease transmission by different routes of infection. Are unrelated to the findings of Daniel Carleton Gajduseck, pediatrician, virologist and anthropologist, on the incidence of the disease known as Kuru in Papua New Guinea and the work of specialist radiation Tikvah Alper and the English mathematician John Stanley Griffith, who in 1967 conceived the the hypothesis model of that disease transmission is performed only protein particles with the ability to modify other proteins found in the body. After 15 years of this assumption, Stanley Prusiner used the term "prion" to describe this infectious protein particle. The first and last were awarded the Nobel Prize for their work. The Science Magazine waited more than six months before publishing the work of Prusiner, fearing it was crazy. Criticism and questioning about these assumptions continue to advance the science, but about the prion theory prevails nowadays and this is polilquio science that his team would be present for those who are unraveling the mysteries of the brain are more likely to unravel the mysteries of how to combat prion diseases such as CJD, Alzheimer's, Parkinson's, among others.

In Natal (RN), the city chosen for the implementation of the International Institute of Neuroscience of Natal, since 2006 there have been 6 cases of CJD and, in 2011, an RN for 42 years, and a carioca 31, who lived in this town just year were admitted to the one-month interval between admissions at the University Hospital Onofre Lopes, both victimized by CJD. These two people had no family relationship or were known. The authorities pointed out "a gene mutation" as the probable cause of the disease and announced that the autopsy should not be done in both cases to avoid contagion. My mother also had a necropsy denied by authorities in Brasilia (DF) of the same reasons that those who carry out would be putting themselves and their employees at risk of contracting the disease. Regarding EETs, we are in the Middle Ages in Brazil, with regard to the understanding of the disease and development of public policies to address it in the States. So Paulo remains the exception, where most of the financial and human resources. In Rio de Janeiro there are several cases, the most recent was the Adelie Amorim, 69, whose admission was denied by many hospitals:http://oglobo.globo.com/rio/ancelmo/posts/2013/02/21/suspeita-de-mal-davaca-louca-assusta-cidade-do-rio-487100.asp#.UW6Eoqs8MWc.facebook

I would like to see your staff interacting with the group of Johannes Hayabaeck, which demonstrated that prions can be transmitted through the air, the group Claudio Soto, that by grafting brain tissue of a person diagnosed with Alzheimer's in mice caused these develop the same pattern of disease with plaque buildup of beta-amyloid protein in the brain, John Collinge and Emmanuel Asante, who managed to prove with the use of guinea pigs that prions of bovine spongiform encephalopathy (mad cow disease) is DCJnv propagate as sCJD and also allowing the conclusion that there are cases of sCJD which may be the result of consumption of beef from cattle infected with BSE or other prion disease of cattle and scrapie perhaps via other animals. Here are two newspaper clippings indicating that science, especially Brazilians, are not trading knowledge from the necessary questions:

"The scrapie was introduced in Brazil by importing sheep Hampshire Down breed of British cattle in 1978. Since then, due to the political import of sheep from Europe and more recently in North America (Canada / USA), there were seven outbreaks disease occurred in the states of Paran and Rio Grande do Sul (RS). Both recent cases of disease involving sheep created in MS and RS. Until 2001, the disease was recorded in sheep imported. The concern is that the records of scrapie 2003 (PR) and the two were recorded in 2006 in sheep born in Brazil, suggesting that this disease can no longer be considered exotic in our herd. "

Sheep scrapie can be a source of contamination for those who have contracted CJD in the country?

"In December 2012, the government confirmed the identification of the causative agent of mad cow disease in an animal that died in Paran in 2010. Government argues that the case was isolated and was not enough to change the risk classification of Brazilian beef. Therefore, decisions to restrict imports are seen as protectionist measures by Brazil. Japan, South Africa, South Korea, Taiwan and China stopped importing all Brazilian products, live animals or frozen beef. Peru adopted the same measure , for 90 days. Lebanon Jordan and the restriction applied only to meat from Paran. Saudi Arabia only purchase meat from Para Chile've stopped buying sharps bone and flesh. "

How can Brazil take almost two years to have the laboratory test to confirm the existence of a prion disease in that animal? How is it possible that autopsies are denied in humans with TSE? Who is taking care of disinfection of surgical instruments to prevent diseases like that?

It is necessary that the scientific community see the issue of prion diseases besides the prospect of profit from patent medicines. The discussion must start from the principle that we are all subject to contract this disease if the neglect continues. I write this message for you and your colleagues hoping that you include prion disease in your research agenda. Please participate in this debate, since you have publicly declared that you see science as an instrument of social transformation.

Sincerely.

Nathlia Kneipp