sábado, 27 de fevereiro de 2016

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.
Precision Medicine
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.
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




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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.)

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The White House, Washington
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.
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