At the heart of my story is a single typo in my genome.

We all carry around thousands of typos in our DNA, most of which don't matter much to our health -- but my typo is an unusually clear-cut case. It's a single change in a particular gene that causes fatal genetic prion disease, where patients can live 50 healthy years, but then suddenly fall into deep dementia and die within a year. And there's no treatment -- at least, not yet.

In 2010, I watched this disease unfold firsthand. I had just married my husband Eric Minikel, the love of my life. My mom, healthy at 51, had single-handedly organized our beautiful wedding. Then, all of a sudden, we were watching her waste away before our eyes. We had no name for what we were seeing. It was only from her autopsy that we learned there was a 50 percent chance I'd inherited the genetic mutation that killed her.

We decided right away I'd get tested. We wanted to know what we were up against. After months in agonizing limbo, a geneticist confirmed our greatest fear:

"The same change that was found in your mother was found in you."

Even though we received bad news that day, choosing to get predictive genetic testing was, second to marrying Eric, the best decision I have ever made. It converted a potentially life-shattering trauma into a potentially life-giving tool. Knowing the hard truth has given us a head start against our formidable medical enemy.

Empowerment means something different for every patient. Taking on the disease in the lab is what it means for us.

Patient empowerment is what the President's Precision Medicine Initiative is all about: knowing your own health information so you can make smarter decisions about your own health care.

Eric and I decided that even when there's nothing you can do, there's something you can do.

We waged a campaign to educate ourselves -- taking night classes, attending conferences, and eventually taking new jobs in research labs. We retrained as scientists by day and applied what we were learning to understanding my disease by night. Four years later, we're now Harvard PhD students working side-by-side at the Broad Institute, where under the guidance of a team of amazing colleagues, we are devoting our lives to developing therapeutics for my disease.

Yesterday, I spoke on a panel at the White House about how critical the Precision Medicine Initiative is, joined by President Obama and medical professionals and individuals with stories to share. You can watch it here.

We know the road ahead is uncertain -- no amount of hard work can guarantee there will be a treatment for me when I need one.

But President Obama's commitment to the Precision Medicine Initiative gives me hope that we have a fighting chance. Now is the best moment in history to be up against a rare, but genetically well-understood disease.

We are going to do everything we can, hand-in-hand with creative allies from every sector, to build this bridge as we walk across it and develop a treatment that could save my life, and the lives of many others.

Thanks for listening,

Sonia

Sonia Vallabh
Cambridge, MA

4th Brazilian Corporate Communication day! New York, april 16,2014.
Featuring best pratices of Brazilian Corporate Communications,
Aberje – Brazilian Association for Business Communication is proud to announce the 4th Brazilian Corporate Communications Day to be held in New York City. It’s a unique opportunity to meet senior Corporate Communications´ practitioners and get to know more about challenges and trends related to corporate communications strategies and practices developed by Corporations within Brazil and in a global environment.

The Brazilian Corporate Communications Day aims to promote and improve Brazil's image internationally, build relationships and exchange experiences among practitioners. The program consists of a half day seminar with presentations that cover aspects of Brazil´s business, cultural, social and political environments.
(Costa Consulting Co.)

Register today for the Small Business Expo! NEW YORK CITY June 9th • Jacob K. Javits Convention Center • 9:30 AM - 5 PM NETWORK WITH NEW YORK'S BUSINESS OWNERS. Home     •     About     •     Exhibit     •     Partner     •     Register REGISTER FREE TODAY FOR SMALL BUSINESS EXPO  RSVP FREE NOW Here's what you can look forward to at Small Business Expo: • Huge Exhibition Hall with 150+ Exhibitors FREE! • 35+ Business-Critical Workshops FREE! • Speed Networking Sessions FREE! • How-To Demos FREE! • Industry Meetup FREE! • Business Card Showcase FREE! • Inspiration2020 Showcase Theater Presentations FREE! INTERESTED IN EXHIBITING? (Very limited exhibitor space available) ATLANTA December 10th HOUSTON February 4th MIAMI March 3rd PHILADELPHIA March 24th BOSTON April 7th CHICAGO April 21st DALLAS May 19th NEW YORK June 9th MINNEAPOLIS June 23rd SEATTLE August 11th SAN DIEGO August 25th SAN FRANCISCO September 15th PHOENIX October 20th LOS ANGELES November 10th Download Exhibitor Pricing Chat With Us Call Us At: 212-404-2345 Email Us

In June, I wrote this in a letter to the President: "I did not vote for you. Either time. I have voted Republican for the entirety of my life. I proudly wore pins and planted banners displaying my Republican loyalty. I was very vocal in my opposition to you -- particularly the ACA. Before I briefly explain my story allow me to first say this: I am so very sorry. I was so very wrong. "You saved my life. My President, you saved my life, and I am eternally grateful. "I have a 'pre-existing condition' and so could never purchase health insurance. Only after the ACA came into being could I be covered. Put simply to not take up too much of your time if you are in fact taking the time to read this: I would not be alive without access to care I received due to your law. Thank you for serving me even when I didn't vote for you. Thank you for being my President." The Affordable Care Act saved my life. I can now say, after several surgeries, that I'm in recovery from what was a serious autoimmune disease. Kicked it to the curb. That is why I am so excited to welcome President Obama to Milwaukee. Today, he'll congratulate the people of Milwaukee on helping deliver the same health care that saved my life to so many in their community. Tune in to watch his speech at2:50 p.m. Eastern. Before the Affordable Care Act, I was unable to pay for an incredibly expensive drug that helps to stabilize my condition. So, because I was too poor to pay thousands of dollars for medicine every few weeks, my hospital trips were emergency ones, to keep me from dying. There was absolutely no hope -- and I was quickly running out of money. Like many fellow patients, I was stuck between paying what I couldn't afford and going without the health care I needed. Then the President signed this bill. I was against it at first -- very against it. But with the Affordable Care Act, I was finally able to receive the quality of care that had eluded me for years. I was able to consult the top surgeon in my state for the particular surgery I needed. I was able to receive the stabilizing drug that was always hidden behind a doctor's apology: "I'm sorry, Mr. Brown, we have to take your financial considerations into account." I was able to stay at one of the best equipped hospitals in my state for as long as I needed, without having to worry about checking myself out early because of cost concerns. I had hope. I saw things change after the Affordable Care Act. People who were denied treatment because of exorbitant cost, well, they started to get that treatment. The millions of people who were locked out of health insurance due to pre-existing conditions were finally able to seek medical counsel. Those who were denied access to medications could now take them. America started to take care of her own. In just a little bit, President Obama will take the stage to help celebrate Milwaukee's victory in the Healthy Communities Challenge and talk about the progress we've made on health care as a nation. We deserve to live in a country where everyone has the same access to quality care that I did. Watch the President's speech to hear how he's making that happen. I'm proud to welcome him to Wisconsin.

THE WHITE HOUSE  What President Obama is looking for in a Supreme Court nominee: With the passing of Justice Antonin Scalia, the President now has a duty to nominate someone to sit on the bench of our nation's highest court. Article II, Section 2 of the Constitution makes that responsibility clear. It's a responsibility President Obama takes seriously -- and one he hopes the Senate will take seriously, too. This week, in a guest post for SCOTUSblog, the President offered some insight into what he's looking for in a Supreme Court nominee. Here's what he had to say: The Constitution vests in the President the power to appoint judges to the Supreme Court. It’s a duty that I take seriously, and one that I will fulfill in the weeks ahead. It’s also one of the most important decisions that a President will make. Rulings handed down by the Supreme Court directly affect our economy, our security, our rights, and our daily lives. Needless to say, this isn’t something I take lightly. It’s a decision to which I devote considerable time, deep reflection, careful deliberation, and serious consultation with legal experts, members of both political parties, and people across the political spectrum. And with thanks to SCOTUSblog for allowing me to guest post today, I thought I’d share some spoiler-free insights into what I think about before appointing the person who will be our next Supreme Court Justice. First and foremost, the person I appoint will be eminently qualified. He or she will have an independent mind, rigorous intellect, impeccable credentials, and a record of excellence and integrity. I’m looking for a mastery of the law, with an ability to hone in on the key issues before the Court, and provide clear answers to complex legal questions. Second, the person I appoint will be someone who recognizes the limits of the judiciary’s role; who understands that a judge’s job is to interpret the law, not make the law. I seek judges who approach decisions without any particular ideology or agenda, but rather a commitment to impartial justice, a respect for precedent, and a determination to faithfully apply the law to the facts at hand. But I’m also mindful that there will be cases that reach the Supreme Court in which the law is not clear. There will be cases in which a judge’s analysis necessarily will be shaped by his or her own perspective, ethics, and judgment. That’s why the third quality I seek in a judge is a keen understanding that justice is not about abstract legal theory, nor some footnote in a dusty casebook. It’s the kind of life experience earned outside the classroom and the courtroom; experience that suggests he or she views the law not only as an intellectual exercise, but also grasps the way it affects the daily reality of people’s lives in a big, complicated democracy, and in rapidly changing times. That, I believe, is an essential element for arriving at just decisions and fair outcomes. A sterling record. A deep respect for the judiciary’s role. An understanding of the way the world really works. That’s what I’m considering as I fulfill my constitutional duty to appoint a judge to our highest court. And as Senators prepare to fulfill their constitutional responsibility to consider the person I appoint, I hope they’ll move quickly to debate and then confirm this nominee so that the Court can continue to serve the American people at full strength. You can read his blog post here, and make sure to get the latest updates on the Supreme Court nomination process at wh.gov/scotus.

PRÉ-SAL: VERDADES E MITOS CONVENIENTES  (Leia no site) 

Por José Serra.

A Petrobras mergulhou numa crise que lhe fez perder o oxigênio necessário para dinamizar a exploração do pré-sal. Para trazê-la de volta à superfície, o Senado está prestes a votar o PLS 131, de minha autoria, relatado pelo senador Ricardo Ferraço, cujo objetivo é tão simples quanto essencial: livrar a empresa das obrigações de ser a operadora exclusiva em todos os campos do pré-sal e de arcar, simultaneamente, com 30% de todos os investimentos.

Adversários do projeto têm difundido a teoria de que o PLS levará o governo a vender na bacia das almas as jazidas do pré-sal. Isso é absolutamente falso.

O projeto não tem cronograma de leilões nem promove alteração no regime de partilha. Essas continuam sendo atribuições indelegáveis do Poder Executivo. Mais ainda, supor que os preços de hoje terão papel totalmente determinante nos leilões é desconhecer o funcionamento do mercado de petróleo. Os preços do óleo seguem trajetórias cíclicas e isso continuará no futuro. Além disso, feito o leilão de um determinado campo do pré-sal, a produção só se inicia 7 ou 8 anos depois. E a vida útil desse campo será em torno de 30 anos.

O PLS tampouco retira da Petrobras os campos já explorados por ela, que são muitos, nem impede a empresa de participar de novas licitações. Continuará vigente, vale lembrar, o art. 12 da Lei nº 12.351, que dá ao chefe do Executivo a prerrogativa de conceder à Petrobras — sem licitação e por decreto — a exploração integral de qualquer campo, se for do interesse nacional. Temos feito essa lembrança centenas de vezes, mas a existência desse dispositivo é ocultada pelos tribunos que se opõe ao projeto e ainda desconhecida por uma parte dos parlamentares.

O gargalo verdadeiro do pré-sal, hoje, é a incapacidade financeira da Petrobrás, uma empresa em apuros. Sua geração bruta de caixa anual é da ordem de US$ 25 bilhões, enquanto o vencimento anual de seus débitos é de US$ 20 bilhões. Encolheu-se brutalmente o espaço para novos investimentos. A dívida bruta da empresa está acima de R$ 500 bilhões, mais de 5 vezes o nível de 2009 e cerca de 10% do PIB brasileiro! Por isso mesmo a Petrobras já abandonou a meta de 4,2 milhões de barris por dia em 2020, que tinha sido anunciado na época da megalomania lulopetista, reduzindo-a a 2,7 milhões.

Para atenuar a crise financeira da empresa, o governo Dilma, do PT, convém enfatizar, tem posto à venda pedaços dos ativos da Petrobrás e de suas subsidiárias, de forma inepta, não planejada e, agora sim, na bacia das almas. Por que, neste caso, os patriotas não reclamam? Sequer sabem que o governo Dilma quer transgredir o regime de partilha pela porta dos fundos, de fininho, pois pretende, por meio da chamada “unitização”, ampliar as concessões que já existem no polígono do pré-sal. Por último, a fim de fazer caixa dentro do sufoco, e com a complacência do Planalto, a Petrobrás não está repassando aos consumidores a queda dos preços do petróleo. Desconsiderados os impostos, a gasolina brasileira está sendo vendida a preços (em reais) quase 50% superiores aos internacionais!

Outro argumento dos que não querem desobrigar a Petrobrás de ser a operadora única do pré-sal, mesmo à custa da paralisia da exploração da área, é sugerir que vale a pena esperar, pois o custo de exploração da Petrobras no pré-sal seria de US$ 9 por barril – de matar de inveja a Arábia Saudita.

Esse número é tão impressionante quanto falso. Entre janeiro e setembro de 2015, o custo da produção do segmento de Exploração & Produção foi de U$ 18,7 bilhões, segundo relatório da Petrobrás. A produção da empresa no período foi de aproximadamente 750 milhões de barris. Portanto, o custo médio foi de US$ 25 por barril, cerca de três vezes o número divulgado em comícios dos sindicalistas que se acham donos dos ativos da empresa. Donos só dos ativos, pois, para eles, os passivos ficam por conta do resto da população brasileira.

Vejam só: naquele número sequer estão computados os custos financeiros, os custos exploratórios e as despesas administrativas gerais. Se isso for feito, o custo médio da Petrobrás vai para US$ 32, equivalente a 4 vezes o propalado custo da empresa no pré-sal! Isto apesar das maiores dificuldades operacionais que a exploração do pré-sal impõe.

Deixando os delírios de lado, é preciso esclarecer que o problema da Petrobrás não é o da falta de eficiência técnica. Pelo contrário, o que sufoca a empresa é a incapacidade financeira de fazer os investimentos necessários – sem mencionar, evidentemente, suas dificuldades de governança e gestão.

No novo marco que proponho, a Petrobras recuperaria o direito de selecionar os seus investimentos, de acordo com a sua capacidade econômica e seu interesse estratégico. Diante da possibilidade de cada novo campo a ser explorado, ela diria ao CNPE se tem ou não interesse de exercer a preferência – dispondo de um mês de prazo para se manifestar. O que tem isso de errado? Nada. O que tem de certo? Produzir mais petróleo, independentemente da origem do capital, gerando-se empregos, receitas para a União, para os estados e os municípios e mais recursos para a educação e a saúde.

Se eu pautasse minha ação política e parlamentar nos critérios do quanto pior melhor, não estaria aqui insistindo num projeto que beneficiará o governo e a nação. Para isso temos de tirar a Petrobrás do jugo das vanguardas do atraso. As mesmas que promoveram a desindustrialização do país, pervertendo os efeitos da bonança externa da década passada, promovendo o atraso da infraestrutura de desenvolvimento e quebrando a Petrobrás mediante o arrocho eleitoral dos preços dos combustíveis e os investimentos megalomaníacos em refinarias superfaturadas e inviáveis.

NOTA: Quando este artigo foi enviado ao jornal, a votação do projeto no Senado ainda não havia sido concluída.

SENADOR DA REPÚBLICA, EX-PREFEITO E EX-GOVERNADOR DE SÃO PAULO

Acompanhe novos artigos no meu site: http://www.joseserra.com.br

The First Chamber of Commerce for Colombia Established in the United States (1927). www.colombianamerican.org

The Colombian American Association, Inc. (CAA) is a private, non-profit business organization founded in 1927 in New York. It was the first bi-national Chamber of Commerce for Colombia established in the United States.

wilsylvince.com      FEBRUARY NY LAUGHS                                                           FEBRUARY 2016   GOTHAM LAUGH BEATINGS! NEW YORK CITY - AUG. 19th - 20th Happening this weekend in New York City - I'm headlining at Gotham Comedy Club Friday Feb. 26th & Saturday Feb. 27th! For more info go to: www.gothamcomedyclub.com            FRIDAY FEB. 26, 2016 Gotham Comedy Club TIME: 8:30PM & 10:30PM  ____________________________ SATURDAY FEB. 27, 2016   NGotham Comedy Club TIME: 8PM & 10PM  ___________________________ LOCATION Gotham Comedy Club 208 W. 23rd Street  New York, NY 10011  (212) 367-900

Short Cuts Film Festival, P.O. Box 2716, New York City, NY 10008 Para visualizar esta comunicação no seu navegador, acesse aqui. Adicione nosso remetente a sua lista de contatos: novidades@novidades.catredeglobo.com.br