Deaf Scientists Just Created Over 1000 New Signs to Dramatically Improve Ability to Communicate
For the deaf, talent and hard work may not be enough to succeed in the sciences. According to the National Science Foundation, deaf Americans are vastly underrepresented in the STEM fields, a discrepancy that has profound economic implications.
The problem with STEM careers for the deaf and hard-of-hearing is that there are not enough ASL signs available.
Deaf and hard-of-hearing professionals in the sciences earn 31 percent more than those employed in other careers, according to a 2010 study by the National Technical Institute for the Deaf (NTID) in Rochester, N.Y., the largest technical college for deaf and hard-of-hearing students. But at the same time, in 2017, U.S. students with hearing disabilities earned only 1.1 percent of the 39,435 doctoral degrees awarded in science and engineering.
One reason so few deaf students gravitate to science careers and may struggle to complete doctoral programs is the communication chasm between deaf and hard-of-hearing scientists and their hearing colleagues.
Lorne Farovitch is a doctoral candidate in biomedical science at the University of Rochester of New York. Born deaf and raised by two deaf parents, he communicated solely in American Sign Language (ASL) until reaching graduate school. There, he became frustrated at the large chunk of his workdays spent communicating with hearing lab mates and professors, time he would have preferred spending on his scientific work.
The problem with STEM careers for the deaf and hard-of-hearing is that there are not enough ASL signs available, says Farovitch. Names, words, or phrases that don't exist in ASL must be finger spelled — the signer must form a distinct hand shape to correspond with each letter of the English alphabet, a tedious and time-consuming process. For instance, it requires 12 hand motions to spell out the word M-I-T-O-C-H-O-N-D-R-I-A. Imagine repeating those motions countless times a day.
To bust through this linguistic quagmire, Farovitch, along with a team of deaf STEM professionals, linguists, and interpreters, have been cooking up signs for terms like Anaplasma phagocytophilum, the tick-borne bacterium Farovitch studies. The sign creators are then videotaped performing the new signs. Those videos are posted on two crowd-sourcing sites, ASLcore.org and ASL Clear.
The beauty of ASL is you can express an entire concept in a single sign, rather than by the name of a word.
"If others don't pick it up and use it, a sign goes extinct," says Farovitch. Thus far, more than 1,000 STEM terms have been developed on ASL Clear and 500 vetted and approved by the deaf STEM community, according to Jeanne Reis, project director of the ASL Clear Project, based at The Learning Center for the Deaf in Framingham, Mass.
The beauty of ASL is you can express an entire concept in a single sign, rather than by the name of a word. The signs are generally intuitive and wonderfully creative. To express "DNA" Farovitch uses two fingers of each hand touching the tips of the opposite hand; then he draws both the hands away to suggest the double helix form of the hereditary material present in most organisms.
"If you can show it, you can understand the concept better,'' says the Canadian-born scientist. "I feel I can explain science better now."
The hope is that as ASL science vocabulary expands more, deaf and hard-of-hearing students will be encouraged to pursue the STEM fields. "ASL is not just a tool; it's a language. It's a vital part of our lives," Farovitch explains through his interpreter.
The deaf community is diverse—within and beyond the sciences. Sarah Latchney, PhD, an environmental toxicologist, is among the approximately 90 percent of deaf people born to hearing parents. Hers made sure she learned ASL at an early age but they also sent Latchney to a speech therapist to learn to speak and read lips. Latchney is so adept at both that she can communicate one-on-one with a hearing person without an interpreter.
Like Favoritch, Latchney has developed "conceptually accurate" ASL signs but she has no plans to post them on the crowd-sourcing sites. "I don't want to fix [my signs]; it works for me," she explains.
Young scientists like Farovitch and Latchney stress the need for interpreters who are knowledgeable about science. "When I give a presentation I'm a nervous wreck that I'll have an interpreter who may not have a science background," Latchney explains. "Many times what I've [signed] has been misinterpreted; either my interpreter didn't understand the question or didn't frame it correctly."
To enlarge the pool of science-savvy interpreters, the University of Rochester will offer a new masters degree program: ASL Interpreting in Medicine and Science (AIMS), which will train interpreters who have a strong background in the biological sciences.
Since the Americans with Disabilities Act was enacted in 1990, opportunities in higher education for deaf and hard-of-hearing students have opened up in the form of federally funded financial aid and the creation of student disability services on many college campuses. Still, only 18 percent of deaf adults have graduated from college, compared to 33 percent of the general population, according to a survey by the U.S. Census Bureau in 2015.
The University of Rochester and the Rochester Institute of Technology, home to NTID, have jointly created two programs to increase the representation of deaf and hard-of-hearing professionals in the sciences. The Rochester Bridges to the Doctorate Program, which Farovitch is enrolled in, prepares deaf scholars for biomedical PhD programs. The Rochester Postdoctoral Partnership readies deaf postdoctoral scientists to successfully attain academic research and teaching careers. Both programs are funded by the National Institutes of Science. In the last five years, the University of Rochester has gone from zero deaf postdoctoral and graduate students to nine.
"Deafness is not a problem, it's just a difference."
It makes sense for these two private universities to support strong programs for the deaf: Rochester has the highest per capita population of deaf or hard-of-hearing adults younger than 65 in the nation, according to the U.S. Census. According to the U.S. Department of Education, there are about 136,000 post-secondary level students who are deaf or hard of hearing.
"Deafness is not a problem, it's just a difference," says Farovitch. "We just need a different way to communicate. It doesn't mean we require more work."
Swiss researchers have discovered a third type of brain cell that appears to be a hybrid of the two other primary types — and it could lead to new treatments for many brain disorders.
The challenge: Most of the cells in the brain are either neurons or glial cells. While neurons use electrical and chemical signals to send messages to one another across small gaps called synapses, glial cells exist to support and protect neurons.
Astrocytes are a type of glial cell found near synapses. This close proximity to the place where brain signals are sent and received has led researchers to suspect that astrocytes might play an active role in the transmission of information inside the brain — a.k.a. “neurotransmission” — but no one has been able to prove the theory.
A new brain cell: Researchers at the Wyss Center for Bio and Neuroengineering and the University of Lausanne believe they’ve definitively proven that some astrocytes do actively participate in neurotransmission, making them a sort of hybrid of neurons and glial cells.
According to the researchers, this third type of brain cell, which they call a “glutamatergic astrocyte,” could offer a way to treat Alzheimer’s, Parkinson’s, and other disorders of the nervous system.
“Its discovery opens up immense research prospects,” said study co-director Andrea Volterra.
The study: Neurotransmission starts with a neuron releasing a chemical called a neurotransmitter, so the first thing the researchers did in their study was look at whether astrocytes can release the main neurotransmitter used by neurons: glutamate.
By analyzing astrocytes taken from the brains of mice, they discovered that certain astrocytes in the brain’s hippocampus did include the “molecular machinery” needed to excrete glutamate. They found evidence of the same machinery when they looked at datasets of human glial cells.
Finally, to demonstrate that these hybrid cells are actually playing a role in brain signaling, the researchers suppressed their ability to secrete glutamate in the brains of mice. This caused the rodents to experience memory problems.
“Our next studies will explore the potential protective role of this type of cell against memory impairment in Alzheimer’s disease, as well as its role in other regions and pathologies than those explored here,” said Andrea Volterra, University of Lausanne.
But why? The researchers aren’t sure why the brain needs glutamatergic astrocytes when it already has neurons, but Volterra suspects the hybrid brain cells may help with the distribution of signals — a single astrocyte can be in contact with thousands of synapses.
“Often, we have neuronal information that needs to spread to larger ensembles, and neurons are not very good for the coordination of this,” researcher Ludovic Telley told New Scientist.
Looking ahead: More research is needed to see how the new brain cell functions in people, but the discovery that it plays a role in memory in mice suggests it might be a worthwhile target for Alzheimer’s disease treatments.
The researchers also found evidence during their study that the cell might play a role in brain circuits linked to seizures and voluntary movements, meaning it’s also a new lead in the hunt for better epilepsy and Parkinson’s treatments.
“Our next studies will explore the potential protective role of this type of cell against memory impairment in Alzheimer’s disease, as well as its role in other regions and pathologies than those explored here,” said Volterra.
Martin Taylor was only 32 when he was diagnosed with Parkinson's, a disease that causes tremors, stiff muscles and slow physical movement - symptoms that steadily get worse as time goes on.
“It's horrible having Parkinson's,” says Taylor, a data analyst, now 41. “It limits my ability to be the dad and husband that I want to be in many cruel and debilitating ways.”
Today, more than 10 million people worldwide live with Parkinson's. Most are diagnosed when they're considerably older than Taylor, after age 60. Although recent research has called into question certain aspects of the disease’s origins, Parkinson’s eventually kills the nerve cells in the brain that produce dopamine, a signaling chemical that carries messages around the body to control movement. Many patients have lost 60 to 80 percent of these cells by the time they are diagnosed.
For years, there's been little improvement in the standard treatment. Patients are typically given the drug levodopa, a chemical that's absorbed by the brain’s nerve cells, or neurons, and converted into dopamine. This drug addresses the symptoms but has no impact on the course of the disease as patients continue to lose dopamine producing neurons. Eventually, the treatment stops working effectively.
BlueRock Therapeutics, a cell therapy company based in Massachusetts, is taking a different approach by focusing on the use of stem cells, which can divide into and generate new specialized cells. The company makes the dopamine-producing cells that patients have lost and inserts these cells into patients' brains. “We have a disease with a high unmet need,” says Ahmed Enayetallah, the senior vice president and head of development at BlueRock. “We know [which] cells…are lost to the disease, and we can make them. So it really came together to use stem cells in Parkinson's.”
In a phase 1 research trial announced late last month, patients reported that their symptoms had improved after a year of treatment. Brain scans also showed an increased number of neurons generating dopamine in patients’ brains.
Increases in dopamine signals
The recent phase 1 trial focused on deploying BlueRock’s cell therapy, called bemdaneprocel, to treat 12 patients suffering from Parkinson’s. The team developed the new nerve cells and implanted them into specific locations on each side of the patient's brain through two small holes in the skull made by a neurosurgeon. “We implant cells into the places in the brain where we think they have the potential to reform the neural networks that are lost to Parkinson's disease,” Enayetallah says. The goal is to restore motor function to patients over the long-term.
Five patients were given a relatively low dose of cells while seven got higher doses. Specialized brain scans showed evidence that the transplanted cells had survived, increasing the overall number of dopamine producing cells. The team compared the baseline number of these cells before surgery to the levels one year later. “The scans tell us there is evidence of increased dopamine signals in the part of the brain affected by Parkinson's,” Enayetallah says. “Normally you’d expect the signal to go down in untreated Parkinson’s patients.”
"I think it has a real chance to reverse motor symptoms, essentially replacing a missing part," says Tilo Kunath, a professor of regenerative neurobiology at the University of Edinburgh.
The team also asked patients to use a specific type of home diary to log the times when symptoms were well controlled and when they prevented normal activity. After a year of treatment, patients taking the higher dose reported symptoms were under control for an average of 2.16 hours per day above their baselines. At the smaller dose, these improvements were significantly lower, 0.72 hours per day. The higher-dose patients reported a corresponding decrease in the amount of time when symptoms were uncontrolled, by an average of 1.91 hours, compared to 0.75 hours for the lower dose. The trial was safe, and patients tolerated the year of immunosuppression needed to make sure their bodies could handle the foreign cells.
Claire Bale, the associate director of research at Parkinson's U.K., sees the promise of BlueRock's approach, while noting the need for more research on a possible placebo effect. The trial participants knew they were getting the active treatment, and placebo effects are known to be a potential factor in Parkinson’s research. Even so, “The results indicate that this therapy produces improvements in symptoms for Parkinson's, which is very encouraging,” Bale says.
Tilo Kunath, a professor of regenerative neurobiology at the University of Edinburgh, also finds the results intriguing. “I think it's excellent,” he says. “I think it has a real chance to reverse motor symptoms, essentially replacing a missing part.” However, it could take time for this therapy to become widely available, Kunath says, and patients in the late stages of the disease may not benefit as much. “Data from cell transplantation with fetal tissue in the 1980s and 90s show that cells did not survive well and release dopamine in these [late-stage] patients.”
Searching for the right approach
There's a long history of using cell therapy as a treatment for Parkinson's. About four decades ago, scientists at the University of Lund in Sweden developed a method in which they transferred parts of fetal brain tissue to patients with Parkinson's so that their nerve cells would produce dopamine. Many benefited, and some were able to stop their medication. However, the use of fetal tissue was highly controversial at that time, and the tissues were difficult to obtain. Later trials in the U.S. showed that people benefited only if a significant amount of the tissue was used, and several patients experienced side effects. Eventually, the work lost momentum.
“Like many in the community, I'm aware of the long history of cell therapy,” says Taylor, the patient living with Parkinson's. “They've long had that cure over the horizon.”
In 2000, Lorenz Studer led a team at the Memorial Sloan Kettering Centre, in New York, to find the chemical signals needed to get stem cells to differentiate into cells that release dopamine. Back then, the team managed to make cells that produced some dopamine, but they led to only limited improvements in animals. About a decade later, in 2011, Studer and his team found the specific signals needed to guide embryonic cells to become the right kind of dopamine producing cells. Their experiments in mice, rats and monkeys showed that their implanted cells had a significant impact, restoring lost movement.
Studer then co-founded BlueRock Therapeutics in 2016. Forming the most effective stem cells has been one of the biggest challenges, says Enayetallah, the BlueRock VP. “It's taken a lot of effort and investment to manufacture and make the cells at the right scale under the right conditions.” The team is now using cells that were first isolated in 1998 at the University of Wisconsin, a major advantage because they’re available in a virtually unlimited supply.
Other efforts underway
In the past several years, University of Lund researchers have begun to collaborate with the University of Cambridge on a project to use embryonic stem cells, similar to BlueRock’s approach. They began clinical trials this year.
A company in Japan called Sumitomo is using a different strategy; instead of stem cells from embryos, they’re reprogramming adults' blood or skin cells into induced pluripotent stem cells - meaning they can turn into any cell type - and then directing them into dopamine producing neurons. Although Sumitomo started clinical trials earlier than BlueRock, they haven’t yet revealed any results.
“It's a rapidly evolving field,” says Emma Lane, a pharmacologist at the University of Cardiff who researches clinical interventions for Parkinson’s. “But BlueRock’s trial is the first full phase 1 trial to report such positive findings with stem cell based therapies.” The company’s upcoming phase 2 research will be critical to show how effectively the therapy can improve disease symptoms, she added.
The cure over the horizon
BlueRock will continue to look at data from patients in the phase 1 trial to monitor the treatment’s effects over a two-year period. Meanwhile, the team is planning the phase 2 trial with more participants, including a placebo group.
For patients with Parkinson’s like Martin Taylor, the therapy offers some hope, though Taylor recognizes that more research is needed.
“Like many in the community, I'm aware of the long history of cell therapy,” he says. “They've long had that cure over the horizon.” His expectations are somewhat guarded, he says, but, “it's certainly positive to see…movement in the field again.”
"If we can demonstrate what we’re seeing today in a more robust study, that would be great,” Enayetallah says. “At the end of the day, we want to address that unmet need in a field that's been waiting for a long time.”