When his young son, Noah, lost most of his vision to bilateral retinal blastoma cancer, like most fathers, Bryan Shaw, PhD worried about his son’s education and future prospects. He also knew that earlier detection of Noah’s cancer might have saved more of his sight.
One of the early signs of retinal blastoma is known as leukocoria “leukos means white and kore means pupil.) “An abnormal light reflection in the eye can signify retinal blastoma, the onset of a cataract, a scarred retina or vitreous hemorrhage,” says Shaw. “The condition will show up most often in low light situations, or in photographs.”
Often in photos there is a phenomenon known as red eye, which is where the flash is reflected off the retina and the camera picks this up. But there is also what’s known as white eye, and it can show up long before a diagnoses of an eye problem. Noah’s cancer was spotted at four months, but reviewing baby pictures Shaw spotted the white eye in photos taken when his son was just twelve days old.
“His tumor may have been smaller then, more of his sight could have been saved,” he says. Shaw teamed up with computer scientists at Baylor University, where he is a professor of chemistry, and created a smartphone app that scans the user’s photo library and seeks out face shots that display white eye. The free app is called CRADLE and it combs through your photo library, flagging any photos displaying possible white eye. “I’ve heard from several parents telling me the app has helped them with early diagnosis,” says Shaw. Indeed, a recent study showed the app can diagnose retinal blastoma 1.3 months sooner than customary diagnosis, with only a 1% false negative rate. “We hope to reduce this to near zero with even more photos to scan,” says Shaw.
But Shaw had more to contribute. At one of Noah’s birthday parties a friend brought along his totally blind little boy. the professor watched with interest as the boy picked up several objects and explored them with his mouth. Days later he was eating blackberries, exploring their texture with his tongue, when it occurred to him what a remarkable touch organ it is.
“The tongue is one of the earliest body parts to form. Some children even explore their environment with the tongue in vitro,” he notes. The tongue is what’s known as a hydrostat, muscular tissue not supported, or limited, by bone. “This it can wiggle into tiny nooks and crevices your fingers can’t reach.” The brain centers that create tongue and fingertip images are very close, and though there are about the same number of touch receptors in both, the tongue has a .58milimeter touch resolution, the fingertips nearly twice that. “We need to know what to eat and what to spit out,” says Shaw. “Exploring with the tongue is also important in language development.” And as Shaw learned, it can even help in the study of chemistry. At Baylor Shaw studies proteins: large, complex molecules that play many critical roles in the body.
“One of the textbooks I use has over 1,100 illustrations of various proteins, and I began to wonder how someone like my son would fare trying to visualize them,” says Shaw. “Which is sort of ironic, considering none of us can actually see them–we have to use illustrations and models.”
Shaw began using his lab’s 3D printer to create tactile models of various proteins, some as large as melons. But after his insight regarding the tongue he decided to go in the other direction.
“I began printing models as tiny as a peanut, even a grain of rice, designed to be explored via the tongue,” he says. “I did include eyelets to attach safety cords so they wouldn’t be a choking hazard.” Shaw sent a package of his models to Kate Fraser, a science teacher at the Perkins School for the Blind. “I sent models of Carbonic Anhydrase, which is the drug target to help treat glaucoma,” he says. “They proved to be excellent hands-on models to help our students understand more about proteins and enzymes as one of the most important examples of proteins,” says Fraser. “I was so happy to have such excellent 3-D models to support our students’ learning experience. Multi-sensory teaching is so beneficial to all students.”
Shaw also began creating protein models using dental resin, which allowed him to make tiny food-safe silicon molds of the protein structures. He then filled these molds with edible treats– “gummy bear” gelatin, chocolate, even taffy. “This way students can learn about proteins, and when they’re done enjoy a sweet treat reward.”
Shaw envisions future chemistry textbooks that come complete with 3D models shrink wrapped to an included sheet of carboard. In the meantime, “Anyone with a 3D printer can make their own molds for about fifty cents each using the Protein Data Bank.
At 13 Noah is demonstrating a decided interest in science, but regardless of whether or not he takes up chemistry 3D models will be useful to all students – sighted and blind. “The end goal is to make chemistry imagery and labs accessible to the vision impaired and encourage their input and participation,” says Shaw, who is currently mentoring a blind chemistry graduate student. “Chemistry and other sciences can only benefit from a wider diversity of perspectives and ideas.”
The Unseen Advantage
One chemist who agrees wholeheartedly with Shaw’s sentiment is Mona Minkara, PhD, a computational chemist at Northeastern University.
“My group wants to understand the components of lung surfactants –
complex substances that keep our air sacs from collapsing,” says Minkara, who is blind. “Bioengineers would like to make synthetic surfactants to treat lung disease, but we must understand the real ones first.”
Minkara is not a stereotypical, storybook chemist, mixing beakers of frothing compounds and lighting a Bunsen burner to see what explodes.
“As a computational chemist, I don’t work with chemicals in the lab. Instead I model various proteins and molecules on computers and run simulations and calculations to determine how they move and interact.”
Most sighted computational chemists visualize their proteins by calling up a program that displays their shapes and how they move. Instead, Minkara mathematically plots the movement and often is able to detect patterns that her sighted colleagues might miss.
“I call it my unseen advantage,” Minkara smiles, and relates how it helped her field multiple job offers shortly after her post-doc work.
“First I had to demonstrate to prospective employers that I have the knowledge and can do the job,” she recalls. “But I also offered examples of how my different perspective and ways of doing things had its own value. Yes, I would require some reasonable accommodations, but when balanced against the total budget on the program and my value as a potential team member was it really going to be that significant of an expense?”
Hoping to encourage other vision impaired students into chemistry and other sciences, Minkara maintains a personal website, where she shares her story:
“When I was seven, I was diagnosed with macular degeneration and cone-rod dystrophy. One specialist told my mother that it was not worth it to spend a penny on my education” and describes her educational journey from Boston schools to Wellesley College to a PhD from the University of Florida. She also outlines in detail the roster of accessibility tools and resources she uses in her research and teaching duties. “It requires a lot of hacks,” she says. “But then as a blind person, isn’t that what we already do?”
In a further effort to encourage STEM education for the blind Minkara and two of her colleagues have created a tactile molecular molecule kit and a braille Periodic Table they hope to soon be able to offer in a “buy one have one donated” model. She’s also developed the curriculum and for the past two summers helped run a two-week summer chemistry camp designed for blind and blindfolded sighted kids. Says Minkara, “We show them it’s possible to perform all manner of science experiments without sight, from building that first school volcano all the way to extracting DNA from strawberries.”
We’ll conclude with a few comments from Dr. Minkara’s website:
The scientific world is very visual and designed for sighted individuals. But I believe it is a hindrance to continue to process everything in the same manner; science requires unique perspectives to tackle problems and develop solutions. People with disabilities and people from different backgrounds will bring those unique perspectives to the table – we are not a burden and can be positive contributors if given the proper tools.
If I could go back and speak to my younger self, I would tell her that scientific vision is more-so much more-than sight.
This article is made possible in part by generous funding from the James H. and Alice Teubert Charitable Trust, Huntington, West Virginia.