High School Student Develops App to Detect Parkinson’s and ET

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High school student Erin Smith has developed an app that helps to diagnose Parkinson’s disease and possibly other neurological conditions through facial recognition. She serves as an example of how young people are stepping up to invest themselves in making a difference in the lives of others through their ingenuity and motivation. Here is her story.

By Erin Smith.
Senior at Shawnee Mission West High School
Overland Park, Kansas

About two years ago, I was watching a video by the Michael J. Fox Foundation when I noticed that whenever Michael J. Fox or another Parkinson’s disease patient would smile or laugh, it came off as emotionally distant. Further, as I talked to Parkinson’s caretakers and clinicians, they reported similar observations in their loved ones years before diagnosis. As I read medical studies, I found that the often overlooked sections of the brain that undergo the earliest changes in Parkinson’s patients are the same parts involved in the formation of facial expressions.

My mind instantly went back to a TV show I had watched as a child called Lie to Me,  where a deception expert would solve crimes by studying facial expressions to determine if people were lying. I wondered if facial expressions could have similar health care implications and provide external manifestations of neurological pathology. 

FacePrint App is Born
I then launched a study in partnership with the Michael J. Fox Foundation Trial Finder to expand my research on a national level. Using the data I collected, I developed FacePrint, a tool to diagnose and monitor Parkinson’s disease using the early stage facial muscle indicators that I identified. FacePrint provides an inexpensive, remote tool for early stage Parkinson’s disease, requiring only a computer and webcam. Further, FacePrint is compatible with facial recognition used by Snapchat and Facebook, creating a selfie that could save your life.

Differentiating Between Parkinson’s and ET
However, after developing FacePrint, I quickly began to notice distinct facial movement differences in patients with other neurological diseases. I started formulating the idea that facial behavioral biomarkers could non-invasively differentiate between Parkinson’s disease and Essential Tremor patients. My new mission has become to create a robust, differential diagnostic and monitoring tool for Parkinson’s disease and Essential Tremor patients. It is my hope that developing accurate diagnostic and monitoring systems for these two diseases will lead to improved, earlier treatment options and ultimately a cure.

Ridding the World of Neurological Disorders
Beyond my goals for my research from a medical perspective, I also hope to create a source of hope.

I firmly believe that change occurs on an individual level. It is one person doing one thing different one time. It is one person caring about one topic and doing everything that he or she can to make a difference in that area. It is one person taking one step forward one time.

I believe that the journey towards a cure for Essential Tremor and Parkinson’s disease will follow the same pattern. However, while change occurs on an individual basis, impact occurs when we all come together to leverage that change. My work is just one piece of the larger puzzle. We must all come together and put the pieces together. It will take everyone devoting their time, efforts, and stories to lead to a day when Parkinson’s disease and Essential Tremor are cured conditions. Although it is easy to become discouraged, my research has filled me with a deep sense of optimism for our future. There are researchers, patients, caretakers, clinicians, and everyday citizens around the world who are making remarkable progress and strides in this field. We are not marching alone. Rather, we are marching hand-in-hand, striving towards the day when our collective impact will create a world without neurological disorders.

YOU CAN PARTICIPATE IN ERIN’S STUDY

Erin is expanding her original research to include essential tremor and persons with no neurological disorders to determine if this test (her app) can easily differentiate between the two, possibly saving patients years of misdiagnosis. The study takes about 10-15 minutes and requires a computer with a webcam. It typically works best on Chrome, which can be easily downloaded online if not already installed (see link below). If you have ET or Parkinson’s Disease please take this test and please encourage your friends and family members without either disease to participate as well.

Three new IETF-funded research projects announced

Research-Appeal-2015-Facebook-CoverEach year researchers with an interest in studying the various aspects of essential tremor are encouraged to submit scientific proposals for grant funding from the IETF. To date, your research donations have provided nearly $1 million to fund numerous promising studies. This year, the IETF will fund three essential tremor research grants totaling $80,000. Grant funding was provided to the IETF from donors, people directly affected by this life-altering condition, like you.

The IETF will award $35,000 to the study entitled “Testing the GABA Nucleo-Olivary Hypothesis of Essential Tremor.” The goal of this research is to systematically test whether impaired function or degeneration of GABAergic N-O neurons induces action tremor, supporting the hypothesis that such mechanisms underlie at least some cases of ET. Read more…

The second study to be awarded $20,000 from the IETF is “Essential Tremor Research Program: Cannabidiol Anti-Tremor Action and Mechanisms.” This research will explore the effects of a particular cannabinoid known as “CBD” (cannabidiol) on ET. Unlike the well-known cannabinoid “THC” (tetrahydrocannabinol), which has mood-altering effects, CBD does not impact mood. CBD has already shown some promising initial results in the treatment of epilepsy, pain, anxiety, and other disorders. Read more…

The final study, “Abnormal Climbing Fiber-Purkinje Cell Synapses in Essential Tremor” will be awarded $25,000. This study will be conducted by Dr. Sheng-Han Kuo, Assistant Professor of Neurology at Columbia University in New York. Dr. Kuo’s team will build upon previous research after discovering an unknown abnormality in essential tremor patients at the location in the brain where the neuron’s electrical and chemical signals are transmitted and received. Read more…

Your research donation could make the difference between critical research being funded, or being turned away. Every donation, no matter the size, counts. Help us keep research moving forward! Make a research donation today and learn more about IETF-funded research.

IETF Funds Ground-Breaking Research for 2014

Brain-blk-and-bluThe IETF is excited to fund three new research studies totaling $85,000 this year. These studies are stepping stones to moving our knowledge forward and can provide progress to change the world for everyone with ET.

The Role of Excitotoxicity in ET Cerebellum – IETF Funded $25,000
The goal of this research is to investigate the role of excitotoxicity in the postmortem ET cerebellum. Excitotoxicity is the pathological process by which nerve cells are damaged and killed by excessive stimulation by neurotransmitters. It has been a suggested approach for ET, however there has yet to be any direct evidence that excitotoxicity plays a role in ET patients. Read more.

Cerebello-Thalamo-Cortical Coupling in ET: Effects of High-Frequency Cerebellar Stimulation on Brain Activity & Tremor – IETF Funded $25,000
Tremor is associated with abnormal activity within different brain regions, particularly the thalamus and cerebellum. Transcranial stimulation (tACS) of the cerebellum may represent a non-invasive therapeutic option for ET patients. TACS is a new technique allowing manipulation of rhythmic patterns in the brain’s cortex with externally applied electrical frequencies. Read more.

A Feasibility Study for an ET Brain Bank at the Arizona Study of Aging & Neurodegenerative Disorders – IETF Funded $35,000
Now in its third IETF-funded year, researchers will continue to examine the brain tissue of those with ET and other neurological disorders after death, searching for a greater understanding of how ET changes the features of the brain, and hopefully leading to more effective diagnostic tools. Read more.

Grant funding was provided to the IETF from its own annual donors, people directly affected by this life-altering condition. If you’d like to become an annual donor, please click here. As our way of saying thank you, you will also receive the new e-book “Essential Tremor: What the Experts Say.”

Researchers prove resistance training benefits dexterity in ET patients

hand_weights_on_workout_matA recent IETF-funded study shows resistance training to be a possible therapy for individuals with ET. A team of researchers from Griffith University and Bond University in Australia identified that a generalized resistance training program for the upper limb is capable of improving manual dexterity in individuals with ET, and to a lesser degree, reduce abduction force tremor.

“Given that resistance training (RT) can reduce tremor amplitude and improve upper limb fine motor control in older adults, it is surprising that few studies have explored RT as a therapy for older adults with ET,” said Dr. Justin Keogh, Faculty of Health Sciences and Medicine of Bond University.

The lack of existing research inspired Keogh and his research team to compare healthy, older adults living with ET to those without ET through function tests. The function tests were used to assess activities common to everyday life. After a six-week resistance training program involving dumbbell bicep curls, wrist flexion and wrist extension exercises, functions test results significantly improved.

Results show that a simple dumbbell-based resistance training program had many significant benefits for older adults, with and without essential tremor. This indicated that both groups of older adults can significantly improve many real-world measures of manual dexterity. The greatest benefits following resistance training were gained for the limb most affected due to the disorder. This study is great news for individuals with ET to further explore the use resistance training as a viable therapy for improving upper
limb-function and ultimately, improving their quality of life.

To learn more about other IETF-funded research, please visit: http://essentialtremor.org/research/ietf-funded-research/.

NIH joins together five brain banks

The NIH announced the formation of a new brain and tissue repository network, NeuroBioBank, in order to create better access to post-mortem samples for those researchers studying brain disorders. Brain banks accept brain and tissue donations from people affect by brain diseases and from non-affected individuals, searching for changes that may offer insight into the cause of disorders such as essential tremor, depression, multiple sclerosis and autism.

Until now, brain banks were funded in a piece-meal sort of fashion; individual researchers requested funds for a specific disease or their specific bank. With this project, the NIH is looking to consolidate its funding efforts into a larger, more effective, standardized repository.

In September of 2013, contracts totaling $4.7 million were awarded to five brain bank repositories:  Mt. Sinai School of Medicine, New York City; Harvard University in Cambridge, MA; University of Miami; Sepulveda Research Corp., Los Angeles; and the University of Pittsburgh.  These banks have already begun developing a web-based sharing system that will allow the whole of the neuroscience community access to brain tissue samples and data, with a simple click of a mouse.

“Instead of having to seek out brain tissue needed for study from scattered repositories,   researchers will have one-stop access to the specimens they need,” explained Thomas Insel, MD, director of NIH’s National Institute of Mental Health.

Other brain banks, such as those funded by the IETF for the study of essential tremor, may become eligible to become contract sites of the NeuroBioBank in the future. In the meantime, the five current NeuroBioBank sites will soon be uploading their specimen inventories and clinical data (early 2014) so that researchers from around the globe can identify available specimens and further our understanding of the inner workings of brain and brain disorders.

For more information about the participating brain banks visit www.neurobiobank.nih.gov. You can also learn more about IETF funded brain banks in the IETF Funded Research section of our website.

Study seeks DBS advancement

DBSDeep Brain Stimulation (DBS) has been around for many years and is one of the most common surgical options for the treatment of essential tremor.  Recently, a new system has been developed that takes DBS to the next level. The new device actually senses and records the brain signals that cause the symptoms of essential tremor and other movement disorders, allowing researchers the opportunity to see exactly what signals are related to abnormal movements.

Although approved for use in the European Union in January, Medtronic’s Activa PC+S system has not been approved by the Food and Drug Administration (FDA) for use in the United States. However, the new device is currently cleared for study in the U.S. and two patients with advanced Parkinson’s disease have already undergone the surgical implantation of the new device.

The hope is that in the near future, this technology will develop to a level where the device itself will monitor the patient’s brain activity and automatically adjust therapy based on the individual’s needs– just as a pacemaker does for heart patients today. This would be a big advancement in DBS if this technology can be developed. Instead of DBS sending a constant, unchanging signal to cancel out tremor symptoms, the device itself would automatically make adjustments and changes to offer patients optimum benefit.

Read more about this study here or learn more about surgical options for essential tremor in this webinar.

IETF Medical Advisory Board Member on TED

Dr. W. Jeffrey Elias photo

Dr. W. Jeffrey Elias

TED, a nonprofit devoted to “Ideas Worth Spreading”, brings the world’s most captivating speakers to the masses through short, prepared talks covering today’s cutting edge technology, entertainment, and design topics. The TED conference recently visited Charlottesville, VA, where IETF Medical Advisory Board member, Dr. W. Jeffrey Elias, discussed his work on the Focused Ultrasound research study for essential tremor.

As Director of Stereotactic and Functional Neurosurgery at the University of Virginia,Dr. Elias has led a number of research investigations. In 2011, his team became the first in the world to successfully treat a person with disabling [essential] tremor using focused ultrasound that was guided by magnetic resonance imaging (MRI). This procedure and subsequent clinical trials have resulted in an outpouring around the globe of investigations using ultrasound interventions to treat disorders of the brain. ¹

In his presentation, Dr. Elias shared his study results along with a message of the importance of research to further scientific advances.

Watch the taped presentation. Dr. Elias is the second to the last speaker (click on the timeline at approximately 08:30.00 to get right to his section).

¹[Unattributed] TEDx, http://www.ted.com/tedx/events/8358. Nov.15, 2013.

DARPA Focuses on DBS

DBS

Deep brain stimulation (DBS) is a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain.

The Defense Advanced Research Projects Agency (DARPA) is the agency of the United States Department of Defense responsible for the development of new, advanced technologies in order to maintain the technological superiority of the U.S. military. DARPA recently announced that it will commit $70 million over the next five years to the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative. More specifically, to further investigate Deep Brain Stimulation (DBS).

Deep brain stimulation (DBS) surgery is an FDA-approved treatment that has been proven to significantly reduce the tremor associated with ET. In DBS surgery, a wire (electrode or lead) is placed in the ventral intermediate nucleus (VIM) nucleus of the thalamus, located deep in the brain. The wire connects under the skin to a pacemaker-like device in the chest, which provides mild electrical currents to control symptoms. In ET, DBS of the VIM nucleus of the thalamus is the most commonly used surgical procedure to control tremor.

Advances in technology have now opened up this option for other complex conditions such as depression, which is precisely why DARPA is so interested in the technology.  According to the U.S. Department of Veterans Affairs, 10% to 18% of Operation Enduring Freedom/Operation Iraqi Freedom (OEF/OIF) troops are likely to have PTSD after they return from service.  That is a significant number of men and women who may require treatment.

So what does this initiative mean for those affected by essential tremor? DARPA would like to see DBS go further than just treat symptoms. “There is no technology that can acquire signals that can tell them precisely what is going on with the brain,” says Justin Sanchez, DARPA program manager, to The New York Times. He explained that DARPA is “trying to change the game on how we approach these problems.”

DARPA hopes to develop DBS to the point that the device will be able to monitor brain signals in real time, treat illness accordingly and measure the success of that treatment. This would be a real games changer for ET patients suffering from severe tremor symptoms. Imagine never having to turn the DBS device on or off, or have it calibrated. It would be programed to know exactly how to manage individual tremor symptoms, then evaluate the results and make adjustments accordingly.

Only time will tell if DARPA is successful with this ambitious project. But even if all their goals are not realized, they are bound to discover an abundance of new information about how the brain works.

Learn more about BRAIN.

Head Snap – Promising New Finding

finger test

Scientists recently released a study that could be a useful aid in diagnosing essential tremor.

Researchers at Columbia University found 20% of essential tremor patients in the study exhibited a head snap, which is a jerking motion of the head while engaging in the finger-nose-finger maneuver. In this maneuver, people touch their nose with their finger and then try to touch the examiner’s finger in an alternating fashion to test for tremor.

The study also documented the prevalence of head snap to Parkinson’s disease patients, and they found that none of these patients exhibited head snap.

Because so many ET patients are misdiagnosed (approximately 30-50%), many as having Parkinson’s, researchers hope attention to head snap will lead to more accurate diagnosis of essential tremor.

Read more here.

 

Phase III of Focused Ultrasound Trial Begins

 

Dr. W. Jeffrey Elias photo

Dr. Jeffrey Elias and the ExAblate

The first patient has been treated as part of a Phase III trial evaluating the success and safety of treatment using the ExAblate Neuro on essential tremor patients. The study builds on promising pilot studies demonstrating the preliminary safety and effectiveness of MR guided focused ultrasound technology. Read about Phase I of the trial here.

The results of this trial are expected to support a submission of the ExAblate Neuro to the FDA for Pre-Market Approval.

InSightec, makers of the ExAblate Neuro, will be partnering with BIRD (US-Israel Binational Industry R&D) and the Focused Ultrasound Foundation for this trial.

Find information on registering for this and other essential tremor studies at clinicaltrials.gov.