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Journal The Beery's Journal
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Latest Journal Entry Speaking this morning at UCSF to the Presidential Commission
by Retta Beery on Thursday, February 2, 2012 | | I'm in San Francisco, getting ready to speak to the Presidential Commission for the study of Bioethical Issues. It's my hope and prayer that I would be a voice for all those patients that don't have a voice. I'm praying that God will speak through me this morning and, soon, whole genome sequencing will become a reality for many families who are searching for answers. They will have a live feed at: http://bioethics.gov/cms/node/636. I speak at 9:15 Pacific time today, Thursday, February 2nd.
If you read this in time, say a prayer that God would work in mighty ways during this meeting.
Retta |
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| Scientific American has a sofa chat about genomic sequencing
by Retta Beery on Friday, January 13, 2012 | | I flew back out to Las Vegas on Wednesday, January 11th, to attend what I thought to be a panel discussion with Scientific American. Instead, it was, what I believe they referred to, as a "sofa chat". The venue was quite unique, held at the Venetian in the middle of upscale shopping, an area with a bar, no walls, roped off but open to all passerby's. I entered the rope, uncertain of what to expect or whom to expect. I was immediately introduced to some well respected people I've heard much about, saw quite a few people I already knew that I very much respect, and met others for the first time that I found quite interesting (in a good way). We socialized for a bit and then were told that Scientific American was ready to begin the "sofa chat." I would guess there were about 50 people inside the "roped off" area. There were 2 sofas they were filming at with the other invited guests standing and sitting around the area, while the moderator, if you will, from Scientific American led the discussions. I sat on one sofa next to Richard Rakowski, one of the principals of "Intersection", and on the opposite sofa sat Greg Lucier, CEO of Life Tech, Jonathan Rothberg, inventor of the Ion Proton sequencer, and Jessie Dillon, film maker. As the moderator began the discussion, he introduced the subject of genetic sequencing, the Ion Proton sequencer's debut at CES in Las Vegas, and some of the impact. Greg, Jonathan and Jessie all contributed to the discussions. After a few comments, I was asked to share our story with whole genome sequencing and Noah and Alexis's new, definitive diagnosis because of whole genome sequencing. As I sat on the sofa, observing all the participants, I knew that God had brought us here for such a time as this. Our family, our kids, myself.....it was not "by chance" or luck. As the moderator went back over parts of our story and made comments like, "a lot of people would say you were lucky to find the article and you were lucky to have your husband work at Life Technologies...you were lucky to have your kids sequenced, etc." I quietly thought about how God had led me, every step of the way, has continued to lead our family, step by step, down the path that He had already prepared for us. It wasn't by luck or chance, it was by His design that I was here for such a time as this. He is using each one of us to be a voice for the voiceless, an instrument to help fight for those that can't fight for themselves. He led me into research for over 4 years, and, in His perfect timing, led me to the article that would save our children's lives. He led us to move to California, taking Joe from an airline to a Life Science company. God led us, not chance. We prayed, every step of the way, and waited at every turn for His direction. He led me to ask about sequencing for Alexis, then He opened the doors to have both Noah and Alexis sequenced. He led us to answers, He gave us a voice, and He continues to lead us in ways that are absolutely beyond anything we could have ever dreamed possible. Not by chance, not luck, but by the power of His Spirit. Only God, only God!! |
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| CES in las Vegas
by Retta Beery on Friday, January 13, 2012 | Noah, Alexis and I flew out to Las Vegas on Sunday for a press event that took place just prior to the CES event. It was the unveiling of the latest and greatest gadgets for 2012. Life Technologies was unveiling their new Ion Proton Genetic Sequencer. While the normal "gadgets" found at CES are the latest and greatest high tech televisions, electronic devices, etc. this is the first year for a biotech company to be onsite. It was a little confusing to much of the press, at first, and then it they understood the reason for this small, little booth on the back row to be at the event. The idea that this sequencer will cost $150k, sequence a whole genome in hours, and the cost to the consumer a mere $1k is unheard of!!
The booth had large posters of Noah and Alexis, before and after, their diagnosis. We had opportunity to share their story with many journalists who had never heard it. We had the opportunity to be on a few live radio shows as well as television. We prayed before the event, knowing that God had opened this door for us to walk through and we felt His peace which surpasses all understanding. We are the "voice" for all those that are suffering from misdiagnosis or undiagnosed, who so desperately need this diagnostic tool to help them. They have no voice, they are wandering around, from doctor to doctor, looking for answers but coming up empty handed. They need a voice, they need someone to come in and give them answers, they need to know there is hope for their ailment. We believe that God has placed us here, for such a time as this, to be a voice for the voiceless and to share His hope. We also believe that whole genome sequencing will help hundreds of thousands of people find answers to the medical ailments that are robbing them of life.
and so we continue to share and speak and use our voices......for all those that are unable to.
Retta |
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| NOVA piece coming out in the spring of 2012
by Retta Beery on Tuesday, November 8, 2011 | Hello,
A producer came out this weekend with her crew to shoot a piece for NOVA which is due to air in the spring of 2012. Our family was thoroughly impressed with her knowledge of DNA sequencing, her questions and her approach. We are hopeful that this piece on Genomic medicine will have a great impact to help bring Personalized medicine and whole genome sequencing closer to a reality for so many today. I am certain this is the way of the future for diagnosis and treatment for patients, but today we are losing more and more people...dying undiagnosed.
I'll keep you updated on when this piece airs.
Retta |
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Latest Article Bloomberg writes an article on Sequencing, featuring our story
by Retta Beery on Tuesday, January 31, 2012 | John Lauerman, from Bloomberg, wrote a great article yesterday on Whole Genome sequencing, the advances, and the future expectations. He highlighted our family's journey with Noah and Alexis and Joe's job. It was a great piece. You can check it out at:
http://www.bloomberg.com/news/2012-01-30/genome-proving-cure-for-ailing-twins-paves-breakthrough-to-doctor-s-office.html |
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