Joe and I had the honor to be the keynote speakers at the Cleveland Clinic Personalized Medicine Health Summit last Monday, May 6th. We shared Noah and Alexis’s story, Joe sharing about his career path while I shared, on the same timeline, Noah and Alexis’s medical journey. It continues to […]
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The Battelle Report was released on Wednesday, June 12th, and our family was thankful to be at the Capital to hear it in person. Our government’s initial investment of $3.8 billion into the Human Genome Project has driven $796 billion in economic impact from 1988 to 2003. A profound impact […]
Battelle Report released on Wednesday, June 12, 2013
Wednesday’s Battelle Report was followed by Thursday’s Supreme Court Ruling for no more gene patenting on naturally occurring genes. This was a huge win for scientists, medical personnel, and, especially, for individuals. What does this mean for us? For one things, if we have a mutation that has been found […]
Supreme Court rules no more gene patenting on naturally occurring ...
On Friday, June 14, 2013, the Smithsonian Museum of Natural History opened “Unlocking Life’s Code”, an exhibit that showcases the discovery of DNA and the Human Genome. Our family had the opportunity to attend a reception the night before the opening. We listened as Eric Green, the director of the […]
Noah and Alexis’s story at the Smithsonian Museum of Natural ...
Genetic Alliance hosted a webinar series, “What about Privacy and Progress in Whole Genome Sequencing?” I had the honor to participate on one of the panels last month on August 13th. As I shared our family’s story with whole genome sequencing and the answers it uncovered for Noah and Alexis, […]
Genetic Alliance Webinar
Noah, Alexis, and I were honored to be able to join Life Technologies and Thermo Fisher on World Rare Disease Day on Friday, February 28th. We passed out blue ribbons to show support for all of the many families struggling with Rare Disease and to share information with so many […]
Noah and Alexis support World Rare Disease Day
Dystonia continues to effect a huge amount of people in the world and yet so many have never heard of it. We continue to find so many other patients, just like Noah and Alexis, that are misdiagnosed. There is a petition to make September the Dystonia Awareness month. Please consider […]
Make September Dystonia Awareness Month
Noah, Alexis, and I had the great pleasure of sharing our story at TEDx Youth in San Diego (November 2013). The link has recently been added to youtube: TEDx The Beerys Noah and Alexis have a passion to share their story and I continue to be amazed at the way […]