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Journal The Beery's Journal
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Articles Dystonia Articles
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Latest Journal Entry Discovery channel in Asia will include our story by Retta Beery on Friday, May 18, 2012 | We had a producer from Singapore out to our home this weekend, along with a film crew from Los Angeles and one from San Diego. We were interviewed, shot b-roll, and lots of family moments for a piece they are doing for Discovery channel in Asia. Our family is excited about the way the story is going global and we know that the more media coverage that takes place, the more people we will have an opportunity to reach who could be misdiagnosed. We also know this will help God open more doors to make whole genome sequencing available in many areas of our world. This journey continues to amaze us as God continues to bring in new opportunities and use previous ones to use His story in our lives! We continue to be in awe of the lives He continues to change through the telling of all that Noah and Alexis have been through. SO cool, SO God!!
Retta |
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| Meeting with Dr. Francis Collins and his director of Communications by Retta Beery on Friday, May 11, 2012 | Wednesday, May 9th
Joe and I met with Dr. Francis Collins, the Director of the NIH, and his director of communications on Wednesday. Dr. Collins has done so much in his life time and I have so much respect for him. He continues to advance medicine in a multitude of ways for our country. His work with the Human Genome Project, the NHGRI, and now the NIH has moved our health care in America in the right direction. We need to get behind him, beside him and in front of him, and help move whole genome sequencing forward to become available on a large scale basis for clinical diagnosis.
Thank You, God, for this meeting and all that You are doing to open doors and help all those suffering with medical conditions and getting no answers. Thank You, for the way You are leading us to make whole genome sequencing and personalized medicine a reality for everyone!
Retta |
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| Speaking at a Congressional Briefing in DC by Retta Beery on Tuesday, May 8, 2012 | Tuesday, May 8th - Congressional Briefing
I flew out to DC last week to speak at a Congressional briefing, to share Noah and Alexis's story. Quite honestly, I have never been very politically active, but this is an incredible reason to be. It's our goal, our passion, our desire to make whole genome sequencing available to everyone for use in the clinical setting. We truly believe that this is a diagnostic tool that needs to be used on a large scale. The more we discover, the more treatments we will eventually find. |
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| NOVA's piece on DNA sequencing by Retta Beery on Thursday, March 29, 2012 | Hello all!
NOVA/PBS ran the piece last night titled, "Cracking Your Genetic Code." I thought Sarah Holt, the producer, did a great job on putting it all together and giving an informed look at both sides of the "debate". I also believe that the more information, the better. I speak to patients and patient's parents all the time and they are searching for answers. While sequencing won't hold the key to all the answers, now, I believe it will continue to give answers to many questions that can lead to eventual treatments and cures. There is so much that has been discovered through sequencing and so much still to be uncovered. Personalized medicine can't come quickly enough. We are on the brink of changing the way our health care system is run, but we need more energy, more funding and more prayers around this entire process. We need answers from our doctors and I believe that we will start to get answers from our genomes. Information is a good thing, it can lead us to understanding more about illness and treatments. We need to continue to push open the doors of understanding so that our children can grow up and have children of their own, so that we can be alive for our grandchildren, and so that we can have healthier lives.
Here's the link for the NOVA piece that ran last night: http://www.pbs.org/wgbh/nova/body/cracking-your-genetic-code.html
Let's continue to move forward, search for answers and find solutions!
Praying,
Retta |
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Latest Article Health and Science Today, December 6, 2011 by Retta Beery on Wednesday, March 21, 2012 | From Health and Science Today, December 6, 2011
by Mark Johnson of the Journal Sentinel
Almost a year after researchers in Wisconsin published a groundbreaking paper describing their use of genetic sequencing to diagnose and treat a 4-year-old Monona boy, a national health agency is shifting its focus to put $416 million into making the secrets of our genetic script part of standard medical practice.
The National Human Genome Research Institute announced the move Tuesday, saying that much of the effort is going toward overcoming the barriers hindering the widespread use of sequencing in hospitals. These include the ethical and analytical challenges of reading the vast flood of data from the human genome.
Doctors and scientists foresee daunting challenges in the thousands of genetic variations they expect to find in every one of us. What software will help them determine which of these variations is causing a specific problem in our blood, kidney or colon? What will doctors do when they are trying to understand one problem in our bodies, but find another, unrelated condition? What information will they tell a child’s parents and what will they withhold?
Such questions are coming to the fore a little more than a decade after scientists announced completion of the first draft of the genome, the full picture of our genetic makeup — everything from the color of our hair and eyes to the slight variations in code that cause rare diseases or put us at higher risk of heart disease. All of this information is written into a four-letter code, each letter representing a chemical base, stretching for 3.2 billion base pairs.
It was only last December that doctors and scientists at the Medical College of Wisconsin and Children’s Hospital of Wisconsin published their study in the journal Genetics in Medicine, describing one of the first cases in medical history in which all of a person’s genes were sequenced and the information used to craft a treatment.
The boy, Nicholas Volker, had a mysterious intestinal disease never seen before and was given a transplant of umbilical cord blood. He has experienced periodic health problems since then but has also been well enough to play T-ball and return to school.
In the meantime, the Medical College of Wisconsin has launched a sequencing program for children with unknown illnesses that meet very specific criteria, and institutions such as Duke University Medical Center and Partners HealthCare System, the largest hospital chain in New England, have introduced their own programs.
“We still have much to learn about how the human genome works, how it works in health and in illness,” said Mark S. Guyer, deputy director of the genome research institute, part of the National Institutes of Health.
The largest share of the money, about $319 million, will go to three large sequencing centers: the Broad Institute in Cambridge, Mass.; The Genome Institute at Washington University in St. Louis; and the Human Genome Sequencing Center at the Baylor College of Medicine in Houston. These institutions will use the money to continue basic research into how the genome works, studies examining the role of genes in complex illnesses such as diabetes and heart disease, and other projects such as a genomic study of cancer.
The remainder of the money will go toward programs on: rare, inherited diseases called Mendelian disorders; ethical and logistical issues expected to arise in bringing genome sequencing to hospitals; and software tools to help doctors sift through the thousands of genetic variations more efficiently.
http://www.jsonline.com/features/health/111224104.html |
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