Category Archives: Health, Healthcare, Support, Science

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:


People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.







The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.








At The Movies: Tactile Art & Tech for Autism

David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.

David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”

Tactile Art | MichEpedia | MconneX

University researchers and students create device designed to aid in Autism therapy

More videos about the project from Dr. Ahlquist.

Social Sensory Surfaces Research Project from Sean Ahlquist on Vimeo.

Social Sensory Surfaces Research Project

Stretch|PLAY from Sean Ahlquist on Vimeo.


Social Sensory Surfaces:

Related work from Dr. Chesney on his work with autism.

Software Engineering Class Hacks Autism

Digital avatars help children with autism – w/video

Hacking Autism and University of Michigan

Video games help autistic students in classrooms

More interesting projects by Dr. Chesney & his students.

Untapped Resonance: David Chesney at TEDxUofM

Engineering with Grace:
Engineering with Grace: Software class aims to help one teen communicate:
Computer Science with Soul:

Provost’s Seminar on Teaching – Presenter David Chesney

#ADA25! Tech + Touch + Targets: Part Two, “Our New Technology”

#ADA25 Amtrak New Accessible Technology #a11y

To continue the series on “what I did for #ADA25,” I’d like to talk about the very exciting event here in town last week, in which Ann Arbor sets the stage for a national high speed rail system, and access for persons with disability is at the core of making this possible.

#ADA25 Amtrak New Accessible Technology #a11y


The event was the ribbon cutting for the new disability-accessible platform at the Ann Arbor Amtrak station.

“New disability-accessible platform opens at Ann Arbor Amtrak station”

The event started out with the mayor, Chris Taylor, describing the importance of the University of Michigan Health System and hospitals in providing advanced health care to the residents of the State of Michigan, and how critical accessible rail transport is for supporting this.

Lt. Governor Brian Calley noted, “Acceptance & awareness are important, but inclusion is a game changer.”

Richard Bernstein, Judge of the Michigan Supreme Court, waxed eloquent, clearly joyful and delighted with this innovation. You can hear his full remarks on Soundcloud.

Joe McHugh (Amtrak’s Senior Vice President) described this as “the flagship of our new technology,” continuing with the vision and possibilities that would come from this.

Joe really meant technology, too! The new boarding platform is retractable, and extends toward the train when in use. The Amtrak press release describes it as “The platform mechanically extends toward the train, bridging the gap created when a level-boarding platform is needed. This next generation of passenger-focused technology will allow America’s Railroad® to deliver a modern passenger railroad that is accessible to all.” That wasn’t the limit of the tech, either. In addition to designing the platform, the interactive portions of the tech, they also had to design manual tech to support the process in case of problems with the automated portions or for situations that require special extra support.

#ADA25 Amtrak New Accessible Technology #a11y

As with all ribbon-cutting events, the actual story started long long before. Or stories, I should say. This event sprang from the intersection of many stories, many people’s experiences. There are the local folk who fought for a better way to take the train, and helped make people aware of the reasons why it should start HERE. There were wheelchair passengers who complained about being put on a jack, hoisted into mid-air, and left dangling in the rain while the station staff try to get the logistics sorted out. There were the Amtrak staff who helped people with luggage, moms with strollers, elderly folk climbing the narrow stairs into or out of the Amtrak cars.

The story that resonated most powerfully with me was told by Richard Devylder, the U.S. DOT’s Senior Advisor for Accessible Transportation.

#ADA25 Amtrak New Accessible Technology #a11y

Richard was born without arms or legs. The combination of his experience, his intelligence, his connections with the community of persons with disabilities all help to inform his position and influence change. And when the opportunity presents itself, he absolutely will go for the brass ring.

That’s kind of what happened one day a few years ago. Richard described a room full of transportation higher ups. He asked, “Well, do you want to see high speed rail in the United States?” Yes, yes, yes, they all did. The next thing Richard said? “Then you have to find a way to let people like me board the train in less than 15 minutes.” BOOM.

That was one story. He had another good one. Richard described one day when he was trying to get on the train, and a ramp had been set up to allow him to board. But he couldn’t even get on the ramp because it was so crowded with people. Elderly with walkers. Parents with strollers. People with heavy rolling bags of luggage. Part of him thought, “Hey, why are all these people blocking my ramp?” Immediately he realized it is because all of them also needed a ramp, and the one provided for him was the only one there. BOOM #2!

We need ramps for boarding trains absolutely as much as we need curb cuts. The next ADA25 story I’ll be telling is about a group of people in virtual worlds. They were pretty impressed when I told them about this new Amtrak platform. Then they asked, “But why did it take 25 years? And why is there only ONE in the entire United States?” More on that in the next post.

The actual ribbon cutting, with Gary Talbot as the honored local person who pushed the hardest to make this happen.

And then people could board!

#ADA25 Amtrak New Accessible Technology #a11y
#ADA25 Amtrak New Accessible Technology #a11y

Updated to include Gary Talbot’s name.

#ADA25! Tech + Touch + Targets: Part One, “I couldn’t type a hug.”

Screenshots from the White House video of President Obama Celebrating ADA25

Yesterday was the 25th anniversary of the signing of the American with Disabilities Act. I want to describe three technology events that happened around the theme of celebrating this milestone! These three stories include high speed rail, robots, assistive communication devices, virtual worlds, web accessibility, exoskeletons, 3d printing, and more. That’s the tech. But the touch is just as important, if not more so, and the question of what’s left that needs doing is the idea of defining and meeting our targets. Let’s get started.


First, President Obama celebrated, of course, with many people. One was Haben Girma, the first deaf-blind graduate of the Harvard Law School. The President would type words to talk with her, and she would listen with her hands on a machine that translated the typing into Braille. “I couldn’t type a hug,” he said.

Screenshots from the White House video of President Obama Celebrating ADA25Screenshots from the White House video of President Obama Celebrating ADA25

Alice Wong, of the Disability Visibility Project, attended the event through her telepresence robot, and wrote about it later, here.

Screenshots from the White House video of President Obama Celebrating ADA25

The White House has made available both the highlights video (under 3 minutes) and the complete event (about 1.5 hours).

President Obama Celebrates the 25th Anniversary of the ADA

President Obama Speaks at the 25th Anniversary of the Americans with Disabilities Act

Towards the end of his remarks, President Obama described the how his father-in-law’s experience with multiple sclerosis helped to shape his passion for reducing barriers for persons with disabilities, and his awareness of how access to necessary resources can help people grow into their potential, and how that helps all of us.

“And just an aside on this, for a long time, he would not get a motorized wheelchair because he had gotten this disability at a time when they weren’t available and it was expensive, and they weren’t wealthy, and insurance didn’t always cover it. And it just gave you a sense of — Michelle and I would talk sometimes about how much more he could have done, how much more he could have seen — as wonderful as a dad as he was, and as wonderful as a coworker as he was, he was very cautious about what he could and couldn’t do — not because he couldn’t do it, but because he didn’t want to inconvenience his family and he didn’t want to be seen as somehow holding things up.” Remarks by the President on The Americans With Disabilities Act

White House Champions and the Dream of Personalized, Precision Medicine (#WHChamps)

White House Champions of Change - Precision Medicine #WHChamps

A couple weeks ago, I had just started a blogpost on the White House Precision Medicine Initiative, when I heard that within the HOUR there would be an update from the White House on this very topic, livestreamed! I scrambled, livetweeted, and this is no longer the post I had planned to write, but a rather different one, that has taken a good bit more time than what I had planned. The ‘update’ on the Precision Medicine Initiative turned out to be a White House Champions event. I had not previously heard of the White House Champions, but it turns out this is a wonderful series of events that have been going on through Obama’s Presidency honoring community innovators in a wide range of topics & issues where America has needed innovation:
citizen science,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
libraries and museums,
open government,
open science,
Parkinson’s disease,
public health and prevention,
science equality for women and persons with disabilities,
suicide prevention,
tech innovation and inclusion,
veterans (several of these events for different challenges),
youth homelessness,
youth violence,
and much, much, MUCH more! My mind is just ringing with all that I’ve missed, and all the wonderful creative innovators I don’t yet know about. How did I miss all of this?

At least I didn’t miss the Precision Medicine event! Here are the honorees, and the treasures they have shared with us, in a very small terse form.

Marcia Boyle (MB’s blogpost about the Immune Deficiency Foundation (IDF). Find them on Twitter at @MarciaIDF and @IDFCommunity)

Hugh Campos (HC’s blogpost about data liberation. Find him on Twitter @HugoOC)

Elizabeth Gross Cohn (EGC’s blogpost on the Adelphi University Center for Health Innovation, their Communities of Harlem Health Revival, and their interactive graphic novel. Find her on Twitter at @Chi_Cohn)

Amy Gleason (AG’s blogpost about CareSync. Find her on Twitter at @ThePatientsSide)

Amanda Haddock (AH’s blogpost about Dragon Master Foundation. Find them on Twitter at @AmandaHaddock and @DragonMasterFdn)

Emily Kramer-Golinkoff (EKG’s blogpost about Emily’s Entourage. Find them on Twitter at @emilykg1 and @EmsEntourage4CF)

Howard Look (HL’s blogpost about Tidepool. Find them on Twitter at @HowardLook and @Tidepool_org)

Dorothy Reed (DR’s blogpost about Sisters Network of Central New Jersey (SNCNJ). Find SNCNJ on Twitter at @sistercentral)

Anish Sebastian (AS’s blogpost about Babyscripts. Find him on Twitter at @ASebastian87 and @Babyscripts)

Here is the best Storify I’ve found of the #WHChamps event, by E. Keeley Moore.

It’s amazing that there were over 1000 tweets per minute at the peaK. Here is the Symplur archive of all the event’s tweets:

Symplur: Healthcare Hashtag Project: #WHChamps

Did you miss it and want to see it? The entire hour-long event was recorded and is available in the White House Youtube channel.

White House Champions of Change – Precision Medicine

DARPA: Biology IS Technology, Biology is INFORMATION Technology #DARPAbit


This is possibly the coolest (or scariest) thing I’ve seen since I become an Emerging Technologies Librarian. I wanted to blog about it a WEEK ago (which is when I made the Storify, over the weekend because I was so geeked I couldn’t wait). The reason I didn’t blog it then was because our library is moving into our renovated digs TODAY and packing took precedence. Somehow that delay just makes this even more delicious. You MUST see this!

DARPA (Defense Advanced Research Projects Agency) is the branch of the United States government most directly and publicly associated with emerging technologies. You better bet that I pay attention to what they’re doing. I try to peek at the DARPA budget, go every so often and poke around on their site, and keep my antennae tuned for mentions of DARPA in the news. They are in the news basically all the time, so I can’t pay TOO much attention, and since in recent years they have been largely focused on robotics (a.k.a. the famous DARPA Robotics Challenge) and engineering, and I am focused on healthcare emerging tech, maybe I haven’t visited as often as I might if it was just for fun. That has changed, because DARPA is now officially into the idea of biology as technology. Check out their recent conferences on this topic: Biology is Technology!

“DARPA’s Biological Technologies Office (BTO) is bringing together leading-edge technologists, start-ups, industry, and academic researchers to look at how advances in engineering and information sciences can be used to drive biology for technological advantage.”

Oh, my, yes. Now, THIS is right on target for what I want to know about in my job. And I bet there are all kinds of grants coming around and possible partnerships that our faculty will want to explore. Here are just a few of the bits the news media picked up from these conferences: targeted antibody development and THoR (Technologies for Host Resilience); brain-computer interfaces; cortical modems & optogenetics; engineered biology and GMOs more broadly; exoskeletons; memory technologies; open data and open source; prosthetics; terraforming Mars with GMOs (and there was a LOT on this!).

Craig Venter on headless humans and predicting your exact face from your DNA

There are some topics that interested me that the news hasn’t seemed to talk about yet, at least not prominently. Aging and immortality. Biocomplexity and Crohn’s disease. Cancer. Innovative research methodologies. Microbiomics. Transplantation and organ farming. Future of scholarship. Oh, and there is SO much more. It was livestreamed, but I couldn’t free up the time to watch it, so I am trying to work through the videos now. Here, join me.

DARPAtv: Biology Is Technology (San Francisco, February 2015)

Arati Prabhakar – Director, DARPA
Fireside Chat: Sue Siegel CEO GE Ventures
Geoff Ling – Director, BTO: Fomenting Technological Revolution
Phillip Alvelda – Program Manager: Beyond Prosthetics
Dan Wattendorf – Program Manager: Outpacing Infectious Disease
Jack Newman, Amyris
Alicia Jackson – Deputy Director, BTO: Programming the Living World
Fireside Chat: George Church interviewed by George Dyson
Justin Sanchez – Program Manager: Brain-Machine Symbiosis
Matt Hepburn – Program Manager: It’s the Host not the Pathogen
Stephen Friend – Sage Bionetworks
Barry Pallotta- Program Manager: A Wild Ride
Doug Weber – Program Manager: Enabling the Body to Heal Itself
Justin Gallivan – Program Manager: Embracing Biological Complexity
Keynote Craig Venter – Founder and CEO, HLI, JCVI and SGI
Keynote Saul Griffith – Otherlab
Karl Deisseroth, Stanford University
Will Old, University of Colorado at Boulder
Michel Maharbiz, University of California, Berkeley
Eddie Chang, University of California, San Francisco
Adam Abate, University of California, Berkeley
Scott Ulrey: Doing Business With DARPA

DARPAtv: Biology is Technology (New York City)

Alicia Jackson – Deputy Director, BTO: Programming the Living World
Welcome to DARPA BiT from Dr. Steve Walker, Deputy Director of DARPA
Dr. Geoff Ling: Fomenting Technological Revolution, DARPA BiT
Martine Rothblatt: Keynote at DARPA BiT
Dr. Phillip Alvelda: The Future of Neural Interface, DARPA BiT
Dr. Alicia Jackson: Programming the Living World, DARPA BiT
Jack Newman: Keynote at DARPA BiT
Zach Serber: Keynote at DARPA BiT
Dr. Elizabeth Strychalski: Biocomplexity, DARPA BiT
COL Matt Hepburn: It’s the Host Not the Pathogen, DARPA BiT
Dr. Doug Weber: Neurobiology as Technology, DARPA BiT
Kevin Tracey: Keynote at DARPA BiT
Dr. Justin Sanchez: Brain-Machine Symbiosis, DARPA BiT
MAJ Chris Orlowski: Optimizing Human Performance, DARPA BiT
COL Dan Wattendorf: Rapid Health Protection for the Population, DARPA BiT
Dr. Harvey Lodish: Keynote at DARPA BiT
Dr. Justin Gallivan: Building with Biology, DARPA BiT
Dr. Barry Pallotta: A Wild Ride, DARPA BiT
Dr. Geoff Ling: Day 1 Closing Remarks, DARPA BiT
Dr. Geoff Ling: DARPA BiT Day Two Introduction
Dr. Stephen Friend: Sage Bionetworks – DARPA BiT Keynote Speaker
Dr. Paul Cohen: DARPA Program Manager, DARPA BiT Keynote Speaker
Dr. Joel Dudley: Mount Sinai School of Medicine – DARPA BiT Keynote Speaker
Dr. Peter Sorger: Harvard Medical School – DARPA BiT Keynote Speaker
John Sculley: Former CEO of Apple and Pepsi-Cola – DARPA BiT Keynote Speaker
Scott Ulrey: DARPA Contract Management Office – DARPA BiT
Dr. Geoff Ling: Day 2 Conclusion – DARPA BiT

So much good stuff! I just had to make a Storify to integrate the videos with the pics and tweets.

And I made a big playlist with all of the videos so far, from all the sessions (partly because I started making this playlist before I found theirs, and because I want all of it in one place, easy for me to find).

Patricia Anderson: Playlist: DARPAbit:

REFERENCES (Chronological order)


Robbin A. Miranda, William D. Casebeer, Amy M. Hein, Jack W. Judy, Eric P. Krotkov, Tracy L. Laabs, Justin E. Manzo, Kent G. Pankratz, Gill A. Pratt, Justin C. Sanchez, Douglas J. Weber, Tracey L. Wheeler, Geoffrey S.F. Lin. DARPA-funded Efforts in the Development of Novel Brain–Computer Interface Technologies. H+ Magazine February 9, 2015.

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015.

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015.

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015.


Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015.

Maxx Chatsko. Can DARPA Change Your Mind on Engineered Biology? The Motley Fool interviews DARPA’s Dr. Alicia Jackson from the Biological Technologies Office. The Motley Fool April 30, 2015.


Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015.

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015.

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015.

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015.

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015.

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015.