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Entries for 'Retta Beery'

04
Dr. Francis Collins, the director of the NIH, was at the White House on April 2, 2013,  with President O'Bama as he "announced the pioneering project to explore the complex workings of the human brain: the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative."   to read more of Dr. Collins visit go to: http://directorsblog.nih.gov/welcoming-the-brain-in...

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Retta Beery posted on April 04, 2013
26
Taken From the Dystonia Medical Research WEBSITE: Several years ago, DMRF-funded investigator Zbigniew Wszolek, MD of Mayo Clinic Florida began studying a large family with three generations living with adult onset focal dystonia. None of the family members had any of the known dystonia-causing mutations, and this was the first study of late-onset primary dystonia in an African American family. D...

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Retta Beery posted on March 26, 2013
25
An estimated 60 million people worldwide suffer from one of 7,000 rare diseases, fewer than 5% of which have treatments approved by the FDA, writes NPS Pharmaceuticals President and CEO Francois Nader. Article can be found at:  http://www.xconomy.com/new-york/2013/03/20/fighting-a-global-war-on-rare-diseases/

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Retta Beery posted on March 25, 2013
11
National Geographic ran a piece on Lilly, Gay, and Steve Grossman after Lilly underwent whole genome sequencing.  Gay reached out to me after hearing our family's story on NPR.  Lilly had been misdiagnosed on several occasions and they wanted answers.  Fantastic article, here's the link: http://phenomena.nationalgeographic.com/2013/03/11/we-gained-hope-the-story-of-lilly-grossmans-...

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Retta Beery posted on March 11, 2013
11
One of the many families we have been able to reach over the years was featured this weekend in several news articles.  Lilly's mom, Gay, contacted me after hearing a news piece on NPR, about 2 years ago, on our family.  We met the Grossman family, did a few email introductions to see if they could get their daughter's genome sequenced, and then heard about a study that was taking place ...

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Retta Beery posted on March 11, 2013
22
The more we move into the area of personalized medicine, the more we see it is becoming a Big Data Problem.....read more.... http://www.pharmalot.com/2013/02/the-op-ed-entering-the-golden-age-of-big-data/

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Retta Beery posted on February 22, 2013
22
World Rare Disease Day is next week and the advocates for Rare disease will be gathering in DC to screen "Here.Us.Now".  Read more..... http://rareadvocates.org/cocktail-reception-movie-screening/

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Retta Beery posted on February 22, 2013
22
There's a team of entrepreneurs and others that have come together to give out millions of dollars to scientists that are willing to take risks, think big, and change our lives: http://www.nytimes.com/2013/02/20/science/new-3-million-prizes-awarded-to-11-in-life-sciences.html?_r=0

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Retta Beery posted on February 22, 2013
18
Gina Kolata, journalist for the New York Times, published a story today that featured Noah and Alexis's story.  Here's the link:  http://www.nytimes.com/2013/02/19/health/dna-analysis-more-accessible-than-ever-opens-new-doors.html?hp&_r=1&

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Retta Beery posted on February 18, 2013
14
World Rare Disease Day is coming up on February 28th.  To find out more information, or for help in raising awareness for Rare Disease Day, go to:  http://globalgenes.org/world-rare-disease-day/

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Retta Beery posted on February 14, 2013
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