Hope is Alive, Thanks to You!

Providing hope is the undercurrent of everything we do at the International Essential Tremor Foundation. We want to let people with essential tremor know there is hope for better treatment options, hope for increased understanding, and hope for a cure.

The key component in all of this is research. We have to continue to investigate what causes ET, how it is passed down from one family member to another, what tames it, what stimulates it and how we can stop it.

Since 2001, the IETF has dedicated a portion of its funds annually toward research initiatives. To date, and with your support, we have provided more than $750,000 in research grants. These grants have helped fund a study on gene variants associated with ET and one that identified changes in specific cerebellar proteins that could play a role in ET. They have focused on assistive devices and medications that suppress tremor. And, they have helped to establish the ET Centralized Brain Repository (located at Yale School of Medicine) to study, post mortem, the brains of people with ET.

July is a time when we hold our annual Research Appeal. All money donated during the appeal goes toward our research grants. These grants keep hope alive. They are a promise for a better tomorrow, for a tremor free life for the millions of people who are afflicted with ET.

As you consider donating to our research grant program, take a look at this year’s IETF Research Grant recipients that you helped fund through your 2017 donations. Donations can be made online.

2018 IETF GRANT RECIPIENTS

Research Study Subject: Optogenetic Interrogation of Cerebellar Circuitry of a Novel Mouse Model of Essential Tremor.

Sponsoring Institution: Columbia University

Principal Investigator: Sheng-Han Kuo, MD

Overview: The major obstacle for the effective therapy development for essential tremor is the unclear brain structural alterations that leads to tremor. To overcome this obstacle, we have previously identified structural alterations in the cerebellum, the brain region important for motor coordination, in essential tremor patients. Now, we will determine how this brain pathology can lead to tremor by establishing a mouse model with similar pathological alterations in the cerebellum. We will use the novel neuroscience tools to specifically silence the neuronal activities within the cerebellum in this mouse model and we will assess how these manipulations can influence tremor. The results of our proposal will establish a new platform to screen therapies for essential tremor and will advance our knowledge of essential tremor.

“The continued support for the International Essential Tremor Foundation is instrumental for my research in the tremor field,” Kuo said. Only through the continued research, we can advance our understanding where the tremor comes from in the brain and find ways to treat tremor.”

 

Research Study Subject: A Pilot Study for Quantitative Assessment of Gait in Essential Tremor Using Wireless Sensors; Potential Diagnostic Tool and Measure of Progression

Sponsoring Institution: University of Kansas Medical Center

Principal Investigator: Vibhash Sharma, MD

Although essential tremor (ET) is the most common tremor disorder, its diagnosis can be challenging, and misdiagnosis of ET is not uncommon. The most common movement disorder confused with essential tremor is tremor predominant Parkinson’s disease (PD). Dopamine transporter (DaT) scan is the only available diagnostic tool utilized in the differentiation of ET from PD. However, due to its expense and limited availability it is important to develop a relatively inexpensive tool that can easily and efficiently be utilized in clinical settings to aid in the accurate diagnosis of ET. With growing evidence of gait abnormalities in ET, studying quantitative gait measures may potentially aid in differentiating ET and PD. In this pilot study, we aim to quantitatively analyze gait and balance in the clinical setting using wireless sensors to determine if the gait abnormalities are present in early ET, and whether comparing various aspects of gait and balance can help to differentiate between ET and PD. In this study, we will include patients who have received a DaTscan as part of their clinical care, to help confirm a diagnosis of either ET or PD.  The DaTscan results will be considered the “gold standard” diagnosis, which will be compared to the results of the gait and balance assessments to determine if these assessments can similarly differentiate the patients as either ET or PD.

“The IETF has played a vital role in expanding research in ET,” Sharma said. “This research grant from the IETF will provide a good platform to conduct a pilot study to explore the clinical spectrum of ET related to subtle changes in gait and balance and potentially develop a new tool to aid in the accurate diagnosis of ET.”

Are Essential Tremor and Parkinson’s Connected?

It’s a common misdiagnosis. Someone notices a tremor in their hands or body and automatically they think they have Parkinson’s disease. Some have said their doctor prescribed a Parkinson’s disease medication for them until they discovered the correct diagnosis was essential tremor (ET). And sometimes a person is diagnosed with ET when they are actually in the early stages of Parkinson’s.

Parkinson’s disease and ET will always be connected because of their similar physical symptoms. There is more public awareness about Parkinson’s, but ET is eight times more common. At the International Essential Tremor Foundation, we hear from individuals who have both conditions.

So what are the differences? How can you learn more? One way is to take part in the IETF’s upcoming FREE teleconference, “ET vs. Parkinson’s: How Do They Differ?” Mark your calendar to join us:

WEDNESDAY, APRIL 18, 2018
12 p.m. pacific time
1 p.m. mountain time
2 p.m. central time
3 p.m. eastern time

Teleconference Speaker
Dr. Holly Shill

Dr. Holly Shill, chair of the IETF medical advisory board, will be the teleconference speaker. Dr. Shill is the director of the Muhammad Ali Parkinson Center at Barrow Neurological Institute in Phoenix. Her expertise includes the diagnosis and treatment of involuntary movements, essential tremor, Parkinson’s disease, Huntington’s disease, dystonia, and ataxia. IETF Executive Director Patrick McCartney will be the teleconference moderator.

How Can You Participate in the Teleconference?
If you’ve never participated in a teleconference before, don’t worry, it’s easy! The entire conference is conducted over the phone; no internet or computer is required. You can listen in by yourself, or host a teleconference party in your home and put us on speaker phone. (Then you can have your own group discussion afterward!)

But first, give us a call, 1-888-387-3667, or go online to register. Reservations are required because our capacity for callers is limited. When you register, you’ll receive a call in number and conference code. And, you’ll have the opportunity to give us a question or two that you would like to have answered during the teleconference. Here are a few questions that have already been submitted:

  • Is Parkinson’s more in the feet and ET in the hands?
  • Does ET and/or Parkinson’s affect your memory?
  • What percentage of people with ET develop Parkinson’s?

Our Past Teleconferences Are Online
The IETF conducts several teleconferences each year as part of its educational offering to people with essential tremor. All teleconferences are recorded and posted on our website so anyone can log on anytime to listen to past ones.

We also host educational forums several times a year in cities throughout the U.S. Our next forum is scheduled for June 23, 2018 in Minneapolis. You can read more about this online.

The IETF’s goal is to provide hope to the essential tremor community through awareness, education, support, and research. These teleconferences are one way we carry out the “education” part of our mission.

We know that by providing educational programs, we can continue to communicate the latest information about essential tremor. Join us on April 18!

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.

No Boundaries, No Favorites. Essential Tremor Has No Familiar Face.

By Tammy Dodderidge, IETF Marketing and Communications Manager

Who do you picture in your mind when you think about someone who has essential tremor? Chances are, it’s a senior adult or a grandparent. The reality is essential tremor has no familiar face. It afflicts people all ages and races. While senior adults struggle with it, so do middle-aged adults, teens and even toddlers. It doesn’t discriminate based on the color of your hair, or eyes or skin.

This is our message during National Essential Tremor Awareness (NETA) Month in March. We want people to understand that ET has no boundaries. It doesn’t play favorites. It is a serious, debilitating condition for more than 10 million people around the world.

Background on NETA Month
Thanks to a three-year effort by the International Essential Tremor Foundation (IETF), in 2010 Congress passed a House resolution that officially designates March as National Essential Tremor Awareness Month. This month gives ET a platform. Most people have heard of Parkinson’s disease and the physical tremors associated with it, but not many have heard of essential tremor. We need to let them know it exists and then educate them about the needs of people with ET.

The next time you are in a crowd, look around and chances are, someone there has ET. You won’t know it because it’s something that people work hard to hide. You won’t know it because people are embarrassed by it. You won’t know it because people fight it and deny it. You won’t know it because many people who have ET suffer depression and isolate themselves so they don’t even leave their houses.

Take Action
What can you do to take part in NETA Month? Many, many things!

  • The IETF has created some special NETA Month social media banners specifically for Facebook and Twitter. Download them from our website and use them on your social media sites during the month of March (as the cover art or just share them with your friends and followers).
  • Order one of our NETA Month posters and hang it in a prominent area where people will notice it: your church, the grocery store, the library, your office. When someone asks, “What’s this poster? What is essential tremor?” you will have done your job in raising awareness!
  • Watch this Tremor Talk blog site during March. We will be featuring some guest writers who have ET, work in the ET community and advocate for people with ET. Their first-hand stories promise to be insightful and educational – and heartfelt. Share these blogs on your social media sites, or send the links to your friends by email. RAISE AWARENESS!
  • Hold a Do It Yourself (DIY) Fundraiser to support the work the IETF does toward education, research and advocacy. We have a list of DIY fund raising ideas on our website, and we also have special DIY  fund raising posters you can order from us for free to advertise your events.
  • Watch your mail for a letter from the IETF and make a donation to receive an NETA Month t-shirt and/or tote bag. These items are one more way to get ET in the public eye. Wear your shirt proudly and use your tote when shopping, or for carrying items to and from work. If you are not on our mailing list, you can join our mailing list online.

Once we all begin to see ET as a condition that impacts millions of people all over the world, we will begin to realize the need for more research that will lead to new treatments, and hopefully someday, a way to prevent or cure it for everyone.

Speak up, speak out and let’s rock this year’s NETA Month!