Essential Tremor Has Strengthened My Resolve

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our fall 2018 scholarship recipients.

 

By Graham Gaddis,
University of Tennessee

As the sixth child in a family of 16 children I am sometimes overlooked, but if we met for a personal interview you would learn how capable I am.

Photo of Graham Gaddis, IETF Scholarship RecipientIn the shadows and in the quiet, I have found an identity, and much of this identity has developed from facing head-on the difficulties of living with essential tremor (ET). I realize that having ET has actually strengthened my resolve to tackle life’s challenges and achieve my personal goals.

The process of living with ET has also enabled me to focus on my genuine priorities. I don’t have the time or the energy to be pressured to be someone else or simply please someone else. As a result of ET, I have learned to stand in my own skin and really pursue my own interests. For example, I am the fifth kid to go to college in my immediate family. My father, aunt and uncle are physicians. I have three sisters who are registered nurses and my brother is studying engineering. Therefore, most people thought I would enter college in a STEM field (science, technology, engineering, math). But my future dreams include farming and food production. I have chosen to major in a field that is completely new to my family, but that I am sincerely passionate about. I think this boldness to pursue a degree unfamiliar to my large extended family has developed as I found courage dealing with my essential tremor.

It has not been easy to struggle daily to spread peanut butter on my sandwich bread, assemble a bookcase with 80 screws dropping them over and over again, or have to practice, in private, my penmanship so that it would be legible. I don’t really like that I spill a drink if it is too full. These things are not “fun”, but in the scope of the greater things in life I can still do everything that God has called me to do. I can shower those whom I love with kindness. I can contribute to my community and have a legacy of faithfulness. I can be sympathetic to the trials and difficulties others face and help in their time of need.

I know I can walk through the challenges of having essential tremor and I can still find joy in all of the areas of life that really matter.

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Interested in supporting students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

Clinical Trials Are Vital to Improving Medical Care

Manish Gupta has over 15 years of experience in developing and executing global clinical trials in cardiac and neurological devices (including those developed to manage essential tremor). He shares how clinical trials work and how the IETF partners with Cala Health to recruit participants. 

 

By Manish Gupta
Vice President of Clinical Affairs
Cala Health, Inc.

Photo of Manish Gupta with Cala HealthClinical trials are research studies that explore whether a medical device, drug or treatment is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses, diseases, disorders or groups of patients. Clinical trials produce the most reliable data available for health care decision making. They follow strict scientific standards to protect patients and help produce dependable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory, where scientists/technologists first develop and test new ideas. If an approach seems promising, the next step for higher risk devices may involve animal testing. This shows how the approach affects a living body and assesses its safety. However, an approach that works well in the lab or animals may not always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits in larger groups of patients.

Quote from Manish Gupta for Research Month blogA clinical trial may find that a new device, drug or treatment

1) improves patient outcomes; or
2) offers no benefit; or
3) causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Patients participating in research are generally referred to as “subjects.” During a clinical trial, doctors, nurses, social workers, and other health care providers might be part of the subject’s treatment team. They will monitor the subject’s health very closely, conducting more tests and medical exams than standard care.

Taking part in a clinical trial can have many benefits. If a new treatment is proven to work, subjects are among the first to benefit.  Even if subjects don’t directly benefit from the clinical trial, the information gathered can help others and add to scientific knowledge. People who take part in clinical trials are vital to the process of improving medical care. Many subjects volunteer because they also want to help others.

Many government agencies, companies, patient advocacy groups and other organizations sponsor clinical trials. Collaboration between two or more of such groups/organizations is common in clinical research to create patient awareness about the clinical research and the disease. Cala Health’s collaboration with International Essential Tremor Foundation (IETF) is one great example of a partnership that creates patient awareness throughout the United States about essential tremor (ET) clinical trials. Cala Health, Inc. is actively conducting ET clinical trials of its wrist-worn therapy at leading centers in the US.

IETF is an essential partner to Cala Health informing the ET community of the clinical research opportunities to advance medical knowledge and patient care.

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About Cala Health, Inc.
Cala Health is a medical technology company pioneering a new class of electrical medicine. The company is merging innovations in neuroscience and electronics to deliver individualized, prescription neuromodulation therapies. These therapies treat chronic disease non-invasively by stimulating peripheral nerves with body-worn electronics. The company is headquartered in the San Francisco Bay Area and backed by leading investors in both healthcare and technology, including Johnson & Johnson Innovation – JJDC, Inc., Corp, Lux Capital, Lightstone Ventures, GV, dRx Capital and Action Potential Venture Capital.

The IETF funds research grants, advocates for more research on essential tremor, and works with companies like Cala Health to recruit participants for research studies. Your donations to research are the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive.

 

 

 

 

 

 

 

 

 

Studying Neuron Signals to Find Relief from Essential Tremor

Dr. Huanghe Yang is the head researcher on the IETF’s 2017 funded study, “Elucidating the Roles of the Ca2+-activated Ion Channels in Essential Tremor.” This blog from him shows how detail-oriented this research study is and his depth of knowledge in this subject area.  

  

Photo of Dr. Huanghe Yang, from Duke University School of MedicineBy Huanghe Yang, PhD
Duke University School of Medicine

The exact pathogenesis mechanism (or manner of development) of essential tremor (ET) is still unclear. We do know, however, abnormal neuronal firing directly causes the ET phenotypes (characteristics or traits). Thus, various means to correct the abnormal neuronal firing in the key brain regions for tremor genesis have been developed to improve the life quality of ET patients.

In order to develop more effective ET therapy, we need to have better understanding on how neuronal firing goes awry in ET. Neurons are ‘excitable’, meaning that they can fire electrical signals called ‘action potentials’. These electrical signals can be rapidly propagated from one end of a neuron to the another end, thereby enabling fast information relay from one neuron to its targeting neurons. When the electrical signals fire at abnormal frequency, serious neurological disease will occur, including but not limited to ET, ataxia and epilepsy.

Neuronal firing is controlled by a group of electrogenic proteins residing on cell surface, called ion channels. Ion channels, like dams of water reservoirs, control charged ions to flux across cell membranes. When open, they quickly allow ions to go down their gradients, resulting in change of membrane voltage, thus generating electric signal. Ion channels, thus, are a class of essential proteins that control a cell’s electrical activities. Thus far, many ion channels have been identified to be associated with various neurological disorders.

Voltage-gated calcium channels (VGCCs) are absolutely required for all neurons. Increase of membrane voltage will open the VGCCs and allow calcium ions to flush into a neuron. This calcium influx will not only further alter membrane voltage, but also quickly increase intracellular calcium concentration. During evolution, calcium has been selected as a universal and master regulator of numerous cellular processes. Therefore, the activities of the VGCCs need to be tightly regulated. Too much or too little activities of the VGCCs will lead to severe diseases such as cardiac arrhythmias, epilepsy, ataxia and migraine.

The exact roles of the VGCCs in human ET pathogenesis have not been clearly dissected. Yet interestingly, the involvement of VGCCs in tremorgenesis in rodent models has long been established. In fact, in a routine rodent ET model, a VGCC in the inferior olivary (IO) nucleus is believed to be the major target of harmaline, a psychoactive alkaloid drug from hallucinogenic plants. Injection of harmaline into rodents quickly and reliably activates the VGCCs in IO neurons, resulting in severe tremor.

We recently discovered that in addition to the VGCCs, IO neurons also express various types of calcium-activated ion channels, including calcium-activated chloride channels (CaCC) and calcium-activated large conductance potassium (BK) channels and calcium-activated small conductance potassium (SK) channels. These calcium-activated ion channels stay in close proximity to the VGCCs and form a highly dynamic and balanced feedback network with the VGCCs. Once calcium influxes through the VGCCs, the calcium-activated channels will quickly respond; and the subsequent chloride and potassium flux through these channels will quickly change membrane voltage and in turn, shut down VGCCs. Indeed, when we genetically deleted the CaCC in IO neurons, the mice had severe defect on learning new motor tasks.

With the generous support from International Essential Tremor Foundation, we have been further exploring the dedicated interactions between the VGCCs and the calcium activated ion channels in the IO, one of the key brain region for ET tremorgenesis. We have discovered that there are multiple types of VGCCs in IO neurons, which have long been believed only express the P/Q type and T type VGCCs. We are currently dissecting the contributions of each type of VGCCs and their downstream calcium-activated ion channels in mouse tremorgenesis. Our findings will help understand the basic mechanism of tremorgenesis.

We aim to translate our findings into novel therapeutic interventions to alleviate tremor symptoms and lessen functional disability associated with ET.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today. 

Research for Essential Tremor Gives Hope to Young People

By Deirdre Maciak
IETF Scholarship Recipient

I was only 16 years old when I was diagnosed with essential tremor. Up until that point, I don’t think I ever really registered how young I was. I had started driving, going out with my friends without supervision, and doing all the things that are expected of teenagers finding their way in the world. It’s an incredibly careless time in one’s life—there is so much ahead of you that the lines between the past, present and future are blurred.

Photo of Deirdre Maciak, IETF Scholarship WinnerMy main goals were always so clear to me. I wanted to get through high school consistently getting better at playing saxophone, study harder and get better grades, get into nursing school, and come out at the end with my dream job. But, being told that you have a chronic condition, one that won’t go away and will probably only progress over time, will bring even a busy-minded teenager to a halt.

Suddenly I had to reevaluate everything that I wanted in life. My diaphragm was spasming too much to have a good control on my air supply while playing saxophone. My physics class only had stools, and because there was no support, I spent more time trying to control my shaking core than paying attention to the teacher. I had a lot of questions. How am I going to be steady enough to draw blood when I’m a nurse? And, why did this have to happen to me, a 16-year-old girl, before I could achieve any of my dreams?

I’m not the first or last teenager out there whose plans have been derailed in some Quote from Deirdre Maciak about the importance of ET researchcapacity due to essential tremor. But, I am part of a generation of people with the condition who have better access to experimental treatments due to research and new discoveries.

Working with my neurologist, I’ve tried one medicine so far, but the side effects were difficult, so I’m exploring other options and I expect to need some of the new innovations in my lifetime for sure. Knowing that there are options out there to help control the frustrating symptoms has helped me put everything in better perspective.

Today, I follow what’s happening with ET by reading the International Essential Tremor Foundation (IETF) website, and watch what hospitals in my area, such as Brigham and Women’s, are doing with focused ultrasound. I was also excited to learn that a family friend, who is a research scientist, recently starting working for a company that is hoping to release a new drug that would be a big step in helping people with neurological disorders including ET. They hope to know this fall if they receive their next approval – and I am optimistic that it can help me and people of all ages who are dealing with this condition.

I was accepted into nursing school and start this fall! So despite this condition, and maybe also partly because of it, I’ll give it my all with the hope of helping people in general, and possibly those who suffer specifically from lifelong conditions as I do.

I still have a lot of questions. But, the new and ongoing research for ET gives hope to us young people, that even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today. 

 

 

Partnering for Successful Essential Tremor Clinical Trials

By Spyros Papapetropoulos, MD, PhD
Chief Medical Officer
Cavion, Inc.

Collaboration with the International Essential Tremor Foundation (IETF) is critical for advancing new treatment approaches for essential tremor (ET). Our company, Cavion Inc., has been engaged in the discovery and development of a new class of T-type calcium channel (Cav3) inhibitors for the treatment of neurologic diseases like essential tremor. Last fall we initiated a Phase 2 clinical trial of our lead investigational oral drug, CX-8998.

Photo of Dr. Spryos PapapetropoulosAs a small precision medicine biotechnology company, we needed to recruit for our clinical trial as rapidly as possible. Our trial, called T-CALM (Tremor-CAv3 Modulation Trial), was designed to assess whether CX-8998 decreases the severity of tremors and improves quality of life by reducing abnormal activity in certain regions of the brain. In addition to evaluating a completely new class of therapy, our trial design also incorporated state-of-the-art digital tools to objectively quantify tremor. We needed to recruit more than 90 patients to participate at 25 research centers around the U.S.

While ET is relatively common, many patients are not under the regular care of a physician for the condition and do not seek out clinical trial opportunities. In addition, ET patients often do not understand the role of clinical trials in advancing new treatments. The IETF has built a community of engaged patients across the country and is a well-established source of news and information regarding tremor. Our intention was to reach patients through a trusted channel and we turned to the IETF to partner with us in informing patients and their loved ones about our clinical trial. They featured a story about T-CALM on their website, sent emails and mailed printed flyers to patients that live in our trial site communities. The information we provided explained the value of clinical trials, the design of our trial and set expectations for what patients would experience as participants in the clinical trial.

The response to the IETF’s targeted outreach was very positive, with many patients visiting our trial website to learn about the trial and contacting the sites to inquire about participating. Thanks in part to the IETF, we were able to complete our study recruitment in time. As ET research continues, I am hopeful that the IETF will continue playing an invaluable role in educating patients and their families about clinical trial opportunities for emerging therapies targeting the treatment of essential tremor.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today. 

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.”

Surgical Treatment of Essential Tremor

(This is an article that Dr. Arif Dalvi wrote for our May issue of Tremor Talk magazine. It’s just a sampling of the stories we include in each issue. Annual donors to the IETF receive Tremor Talk magazine in the mail three times per year.)

By Arif Dalvi, MD, MBA
Director of the Comprehensive Movement Disorders Program
Palm Beach Neuroscience Institute 

Background
Many patients with essential tremor (ET) get relief with medications. However, some patients, despite trying multiple medications, have a disabling tremor affecting activities such as eating, writing or using tools. Severe tremor also leads to social embarrassment and isolation. Surgical options can significantly improve quality of life in such patients.

Surgical treatment for ET goes back many decades. Abnormal circuits in a deep brain structure called the thalamus misfire sending signals to the muscles causing a tremor. In the 1970s, Irving Cooper, a neurosurgeon from Columbia University in New York, introduced the idea of making a lesion (similar to a small stroke) in the thalamus to suppress these tremor circuits. However, long term experience shows tremor relief from this method called thalamotomy may wear off in a few years. Patients with tremor in both hands need a thalamotomy on both sides of the brain, leading to higher risk of complications including difficulty with speech compared with a lesion only on one side.

The Birth of DBS
To find the best target the patient undergoes brain mapping while awake. The area within the thalamus is given a test dose of electrical stimulation to see if the tremor subsides. Alim Benabid, a neurosurgeon from Grenoble in France, realized stimulation on a constant basis could provide long-term control of tremor. He developed a brain pacemaker connected to a wire in the brain targeting the thalamus and the idea of deep brain stimulation (DBS) was born. This is the most established surgical technique for control of tremor. DBS was approved by the FDA in 1997 for ET and is covered by Medicare and many private insurers for appropriate patients.

DBS has the advantage of not requiring a stroke-like lesion in the brain. Unlike with a misplaced thalamotomy, side effects can usually be reversed by turning the pacemaker off. Both sides of the brain can be targeted without inducing the kind of complications seen when thalamotomy is done on both sides. DBS settings can be gradually increased over the years if the tremor gets worse. The battery for the DBS pacemaker requires replacement every three to five years. It must be kept in mind that there is approximately a two percent risk of a brain bleed with initial electrode placement.

DBS results depend on accurate placement of the electrode. New types of electrodes allow electrical stimulus to be directed in different directions. These directional electrodes allow for good tremor control while minimizing side effects even without perfect placement. DBS technology continues to improve with directional electrodes, smaller and longer lasting pacemakers, and rechargeable batteries being some of the innovations.

MRI-Focused Ultrasound
MRI-Focused Ultrasound (MRI-FUS) is the most recent surgical option. High energy ultrasound waves are targeted to the thalamus with high-quality MRI imaging. The ultrasound beam makes a lesion like a thalamotomy. The procedure is done on an awake patient in an MRI suite. A lighter test dose is applied to see if tremor improves. If there are no side effects, a full intensity dose is applied. MRI-FUS does not require a burr hole in the skull or electrodes and pacemakers within the body. In this sense, it is “noninvasive,” but a misplaced lesion can still result in permanent side effects. Small numbers of patients with ET have undergone this procedure, usually with favorable results. How these patients will fare in the longer term remains to be seen.

Surgical option choices for severe tremor should be made under the guidance of a movement disorders neurologist highly experienced with these procedures.

 

Essential Tremor Follows Madison to College

Each semester, the International Essential Tremor Foundation presents four scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our spring 2018 scholarship recipients.

 

By Madison Young
Student at Arkansas Tech University
Russellville, AR

I knew when I went to college that my essential tremor would come with me and life would be something different than what I am used to. The friends and people I have been around have seen my hands and arms shake for years. Now there would be new people. Plus, the stress of college would kick up the numbers of tremors I have based on the amount of stress on my body. I knew I could handle it or hoped I could.

I am a rehabilitation science major/pre-physical therapy so there will be no easy courses, but I also know what I want to do with the rest of my life. I am not going to let a little tremor disorder dictate my path. Right now, I am in a rehab science class and it is all about how to help people with disabilities – how to cope, adjust and react. I had no clue going into this class that I would learn how to adjust to my own.

Yes, I was diagnosed when I was 13, but I have never thought about how this would affect my life long-term, or how I should or would deal with it. I have only thought about how I am just a girl with a little tremor disorder. I honestly haven’t spent much time considering the positive and negative ways I have reacted to having ET. Truthfully, I have continued to think unrealistically, that I could get better. Only recently have I started to adjust to thinking that this is my life, and this is how it is going to be, and it will be progressive. This acceptance and so many new things I have learned about myself and others are helping me move past the fact that I do have this disability.

I could compare having essential tremor to being left handed (I happen to be left handed) or having a hitch in your step. People do not notice it for awhile; they think they see some shaking, but dismiss it. Then they see it happen again, and again, and once they “really” see it, they can’t not see it. My new friends in college didn’t see it for awhile. Now they are constantly trying to see it – see how bad it is, wonder if they can do something to make it better and ask me questions. I know that it is all with good intentions, but it is annoying at times. It makes me wish that I had never confirmed what they thought they were seeing. I could have left the elephant in the room. However, we all have our disabilities, disorders and differences. I have decided it can be looked at as a way to connect with people and bond in a way that others cannot. College kids . . . we all have things that make us self-conscious, but we move past those thoughts together and use our newfound friendships to build a support network and celebrate the things that make us unique. Carry on world. I’m going to be just fine!

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Would you like to support students with ET during their educational journey? Make a donation to the ET scholarship fund online.

 

Comprehensive Meeting Focuses on Tremor Disorders

By Shari Finsilver
IETF Board Vice President

Calling all tremor patients … I have some great news. We are in very good hands!

I had the privilege of attending the 1st International Tremor Congress in New York City on May 11 & 12. I must say, I was totally blown away . . . by the level of research that is currently being conducted around the world, by the wide age range represented, and by the organizational excellence of the entire meeting.

The goals of the conference were:

  • Formulate an evidence-based approach to optimize the treatment for tremor disorders.
  • Develop evidence-based scientific knowledge for the future clinical study design in tremor disorders.
  • Describe the up-do-date clinical diagnosis and treatment in each tremor disorder.
  • Indicate the cutting-edge scientific discovery for tremor, and also current tremor therapy development.

Among the approximately 200 people attending this inaugural conference, there were the experts present . . . those who have created the science of tremor research, whose names grace hundreds of medical journal articles, as well as the textbooks used by the numerous students whom they have all mentored. Then there was the next generation of tremor researchers . . . those who are conducting novel, original studies, leading the way with their brilliant ideas. Also present were students including students in the fields of neurology, movement disorders, public health, etc. They were there to learn, collaborate, and be challenged to continue this very important work. Since much of the successful research is a collaboration between academia and industry, many of those industry representatives were also present, ready to learn with the rest of us.

The first meeting day was devoted to science. This included research projects involving the circuitry of the brain, a focus on Purkinje cells, on climbing fiber synapses, and on neuroimaging, just to name a few areas of interest. The second day focused on the current and emerging therapies, ranging from medications under development for tremor control, to surgical interventions (both invasive and non-invasive,) to wearable devices that can improve tremor control.

The IETF was proud to be one of the many sponsors of this first Tremor Congress. A huge thank-you goes out to the course directors and their committee:  Sheng-Han Kuo, M.D. (Assistant Professor of Neurology, Columbia University), Elan D. Louis, M.D., M.S. (Professor of Neurology and of Epidemiology: Chief, Division of Movement Disorders, Yale University), and Ming-Kai Pan, M.D., Ph.D. (Assistant Professor of Medical Research, National Taiwan University). And, also to the faculty, whose presentations were outstanding.

Raising Awareness About ET and the IETF

Patrick McCartney
Executive Director

I recently attended the 70th American Academy of Neurology (AAN) Conference in Los Angeles, CA along with our board president Dr. Kelly Lyons. This annual conference offered more than 300 top-quality programs covering the spectrum of neurology; exciting networking opportunities; and expanded Experiential Learning Areas that allow attendees to interact, explore, and learn outside of the classroom. This year’s announced attendance was more than 14,000.

AAN offers non-profits free booth space and the IETF has exhibited at the conference for several years. This is a great opportunity for us to raise awareness and educate doctors, medical students, and pharmaceutical and medical device companies about the resources available on essential tremor from the IETF.

I’m always amazed at how many doctors and other exhibitors I talk with at these conference who either have ET or have family members or friends with ET. Talking to these people affirms why we attend these type of conferences because most of them have never heard of the IETF and they’re excited to hear there is a reliable source for accurate and objective information on ET.

Making Connections 
This conference also gave me a chance to catch up with several of our IETF Medical Advisory Board members. I enjoyed seeing Dr. Elan Louis from Yale University School of Medicine, Dr. Mark Hallett, a senior investigator with NINDS and Dr. Keith Coffman from Children’s Mercy Hospital right here in our backyard in Kansas City.

I also had the opportunity to meet with some of our partners who work (or are working on) a variety of ET specific medications or medical devices for the ET community. I was able to spend time with folks from Liftware, Abbott, Cavion Pharmaceutical, Boston Scientific and Medtronic. I also met with one of our newest partners the Alliance for Patient Access.

Another Advocacy Opportunity
In October, we will attend the American Academy of Family Physicians Annual Meeting in New Orleans. We think it’s important to attend this meeting to raise awareness with family physicians who quite often are the first doctors to diagnose ET in many patients. Again, almost all the doctors I talk with at this meeting see ET patients, but have no idea the IETF exists.

I know sometimes it seems like there is nothing new on the horizon to help ET patients. After attending AAN I’m excited about the new projects being worked on including ET specific medications, improvements in DBS and Focused Ultrasound treatments, and new medical devices that will help improve the quality of life for ET patients around the world.