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Journal The Beery's Journal
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Articles Dystonia Articles
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Latest Journal Entry 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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| The Today show will air a piece on our family Oct 27th
by Retta Beery on Wednesday, October 26, 2011 | Hello,
The Today show called and said they are running the piece they did on our family tomorrow, Thursday, October 27th. In the case of breaking news, they will reschedule, but hopefully all will work out for the airing. We are also hopeful and would appreciate all prayers to be for whomever needs to see this piece for hope or new diagnosis, that they would find themselves turning on their television and tuning in.
Retta |
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Latest Article Ion Proton Sequencer a Knock out - Forbes
by Retta Beery on Sunday, January 22, 2012 |
Healthcare Delivers Technical Knockout at CES<http://www.forbes.com/sites/danmunro/2012/01/16/healthcare-delivers-technical-knockout-at-ces/>
Dan Munro<http://blogs.forbes.com/danmunro/>
The Healthcare Compass<http://blogs.forbes.com/danmunro/>
Jan. 16 2012 — 1:31 am | 0 comments<http://www.forbes.com/sites/danmunro/2012/01/16/healthcare-delivers-technical-knockout-at-ces/#post_comments>
For those who don’t know boxing, there are three ways a fight ends. The first is a clear knockout, the second is by vote of ringside judges and the third is when the referee in the ring ends the fight. This last one is known as a technical knockout – or TKO for short. I’m no boxing expert, but the boxing analogy is especially apt for this year’s Consumer Electronics Show (CES) in Las Vegas because there was a live boxing match inside one of the exhibit halls complete with a full size ring, stadium seating and real fighters. I didn’t attend the match, but what I saw at CES was in many ways the equivalent of a TKO by an electronic device specifically for healthcare. Hardened CES vets like Dan Costa (Executive Editor of PC-Mag.com) said it was “the “coolest thing”<http://www.pcmag.com/article2/0,2817,2398817,00.asp> he saw – for the entire show.
[cid:image002.jpg@01CCD528.EAA60A20]<http://blogs-images.forbes.com/danmunro/files/2012/01/331222-life-technologies-ion-proton-genetic-sequencer4.jpg>
Life Technologies Ion Proton Genetic Sequencer
The electronic device I’m referring to wasn’t actually meant for consumer use (thus the TKO), but the consumer implications were as profound as any consumer device at this year’s show – or any other CES in recent memory. Life Technologies Ion Proton Genetic Sequencer<http://www.lifetechnologies.com/us/en/home.html> is about the size of a large laser printer and costs about $150,000. By the end of the year, it will be able to sequence an entire human genome for about $1,000 in a few hours. By comparison, the cost to sequence the first human genome took 13 years, was completed in 2003 and cost almost $4B. Easy to see how this process has been in the exclusive domain of Universities and very well funded research. We can now begin to include genome sequencing at a greatly accelerated rate – and at a price point that rivals (and in some cases is lower) than other types of healthcare testing. Being able to tailor drug therapies with surgical precision and much higher efficacy will have profound effects on major diseases like cancer, Autism, diabetes and hypertension. Not a cure per se, but with a measurable effect on lifespan – globally. This isn’t just Moore’s Law at work, this is a real breakthrough in silicon engineering – and it wasn’t the only announcement or visible commitment by healthcare at CES. There was a lot more.
Making its 3rd appearance inside CES was the digital Health Summit<http://digitalhealthsummit.com/> (dHS) with over 700 registered attendees. Over the course of two days there were a variety of keynotes, panels and presentations focused broadly on the “consumer” healthcare theme. Other healthcare events talk a good consumer game, but I applaud Jill Gilbert and her team for their collective efforts at putting this one right inside CES. Given all of the overlaps and intersects with electronic devices, and the need for those devices to be designed and engineered to work with us on the single most important aspect of our life – our healthcare – this is exactly where consumer healthcare needs to be. Bravo Jill.
[cid:image003.png@01CCD528.EAA60A20]<http://blogs-images.forbes.com/danmunro/files/2012/01/JSculleyDHS1.png>
John Sculley Keynote at Digital Health Summit
At roughly the same time that Steve Ballmer was on the Main CES Stage bidding farewell to Microsoft’s big-booth commitment – John Sculley<http://en.wikipedia.org/wiki/John_Sculley> was center stage at dHS introducing his latest investment in healthcare in the form of Audax<http://www.audaxhealth.com/> – a startup he’s helped to get funded to the tune of about $16M. While Mr. Sculley has a long history of healthcare investing, Audax represents yet another example of working with a college dropout turned Founder/CEO – in this case Grant Verstandig. Grant’s personal experience with 7 knee surgeries (in less than 2 years) is helping to shape both his vision and innovation for a new consumer healthcare future.
Meanwhile, on the actual showroom floor, UnitedHealth Group launched their commitment to CES in the form of a 4,000 square foot booth and micro web site<http://ceshealth.com/>. On display were a wide range of consumer facing solutions and mobile apps (various stages of production) designed to help with different aspects of consumer healthcare life. Some of the apps were “in network” so not available to the general public, but many others were either already in Apple’s App Store – or will be soon – and still others are in development. While it’s always been fairly easy and common to vilify healthcare payers publicly, the commitment I saw and heard by UHG at CES was genuine and definitely had the full support of top leadership – including the very passionate Reed Tuckson (EVP and one of several dHS panelists from UHG). Aside from the XL booth size, the people I met had as much energy, enthusiasm and passion as any Silicon Valley startup. That was clearly the intent of Bud Flagstad (VP of Strategic Initiatives – and another dHS panelist).
Next door to UnitedHealth in the North Exhibit Hall was Ford’s 4,500 square foot booth. Quite literally the world of Telematics (in-car electronics) is sharing consumer foot traffic with Telehealth. One announcement aimed squarely at that synergy is a collaborative effort by Ford, Microsoft, Healthrageous and Blue Metal Architects<http://www.prnewswire.com/news-releases/ford-collaborates-with-microsoft-healthrageous-and-bluemetal-architects-for-in-car-health-and-wellness-research-137114418.html> to research how Bluetooth connected sensors can extend bioinformatics to assist with driver safety and convenience. While they’re still at the prototyping stage with these efforts the possibilities are intriguing and there is clearly a collaborative spirit on the part of some big players that I sincerely hope extends more broadly. Ford also announced plans to open an R&D facility this quarter in Silicon Valley. They are by no means the first auto manufacturer to do that, but given their global footprint – a welcome (and needed) addition.
Back on the Main CES Stage – Peter Diamandis was announcing the $10M Tricorder X-Prize<http://www.qualcommtricorderxprize.org/> as a part of Qualcomm’s Keynote address. The Tricorder X-Prize was actually announced earlier this year – but CES was clearly the preferred platform for sharing the vision and prize with the global electronic community – and it captured a lot of show interest and press.
Zeo, Fitbit, Qualcomm, the Continua Health Alliance and Carnegie Mellon University also had a significant presence in the Exhibit Hall with a variety of devices and services focused on personal healthcare – including a battery powered 5-blade razor from Schick. Ok – so that one was actually more of a traditional consumer gadget – but it’s getting a lot easier to see how these lines are blurring. Sports, fitness, health and daily life are a powerful combination and the intersection with consumer tailored devices is still in its infancy. Motorola, Toshiba and many others featured health and fitness in key portions of either their booth – their demos – or both. No shortage of TV’s to be sure – but the health and fitness focus was more than just a subtle shift. It was prominent and pervasive.
[cid:image004.png@01CCD528.EAA60A20]<http://blogs-images.forbes.com/danmunro/files/2012/01/cesmaps2.png>
No less than 6 fold-out maps for CES 2012
Now to be fair, this isn’t the first year that healthcare has had a significant footprint at CES, but this was absolutely the year that the sparring gloves came off and Healthcare delivered some amazing punches – and then the TKO. Unfortunately, but not all that surprising, out of 12 categories in the CES annual competition<http://ces.cnet.com/best-of-ces/> there isn’t one for healthcare – and I do hope CNET changes that for CES 2013. In that sense, Microsoft’s big-booth departure might be perfectly timed. Consumer healthcare could use the space and then maybe next year we’ll deliver the full KO.
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