Introducing a new, free e-book from ET experts

Ebook-Cover-2014-for-webThe IETF is excited to offer the new, e-book, Essential Tremor: What the Experts Say, exclusively available to annual donors who make a contribution of $30 or more. Through this comprehensive collection of informative articles, you’ll gain insight and a better understanding of essential tremor through the knowledge of the world’s finest movement disorders specialists and experts.

Now in its third edition, the e-book features over 80 articles filled with invaluable information for you to reference time and time again. The e-book is compatible with any e-Reader as well as available for download in PDF format.

The IETF thanks the many physicians, health care providers, and other individuals that contributed time and effort to make these articles possible. These people have contributed greatly to the success of the IETF over the years.

Make your annual donation today and receive the new, e-book, Essential Tremor: What the Experts Say as our way of saying thank you for your contribution.

Free Brain Health Fair

BrainDive deep into the boss of our bodies and explore the wonders of the brain with us at the FREE Brain Health Fair in Philadelphia. On April 26, the IETF will join world-class neurologists and several other neurological organizations to celebrate Brain Health Awareness Day and to educate local families. Brain Health Fair participants will get a first-hand look at the ins and outs of the brain. Activities include vent features educational classes on brain diseases and treatment options, health screenings, free giveaways and resources, plus interactive exhibits for the whole family.

The Brain Fair will be open to the public from 10 a.m. to 4 p.m. at the Pennsylvania Convention Center and is presented by the Brain Foundation and the America Academy of Neurology, educational partners of the IETF.

The IETF is just one of several exhibitors at the event, so please stop by our booth and also check out other exhibitors. Registration is free, but encouraged in advance. To register or to learn more about the event, visit www.BrainHealthFair.com.

Brain Health Fair
Saturday, April 26, 2014
10 AM – 4 PM
Pennsylvania Convention Center, Exhibit Hall A
1101 Arch Street, Philadelphia, PA 19107

Activities:
Hold a human brain
View animal brains
Examine microscopic brain tissue
Free bike helmets (limited)
Participate in swim cap brain art
Learn to cook brain healthy food
Therapy dogs
Brain Health Classes
Cranial Nerve Experience Stations
Kid’s Play Area
Music Performances
Celebrity Autographs
And more!

The Goulden Touch Sponsors IETF Scholarship

Robbie+Gould+Washington+Redskins+v+Chicago+fAjyTF7rGlYlAll Pro Kicker Robbie Gould has a mission to help students affected by ET. That’s why his public charity, The Goulden Touch will sponsor a $500 educational scholarship through the IETF. The scholarship is available for students of all ages living in the Chicagoland area.

While this particular scholarship is limited to the Chicago area, the IETF also offers other $500 scholarships for students affected by ET l
iving throughout the nation. Scholarships are awarded to qualified post-high school students of all ages who have been diagnosed with ET, to lessen the burden of higher education. The scholarship can be used for supplies, books or tuition at licensed, accredited institutions of higher education (including trade schools) and are paid directly to the educational institution. The fall semester application deadline is May 1, 2014, with the scholarship award announcement on July 15, 2014.To apply for The Goulden Touch Scholarship and or to learn more about other available scholarships, visit http://essentialtremor.org/about-the-ietf/scholarships/.

The IETF visits Ohio

Cleveland MarriottJoin me, Dr. Walter and Dr. Miller on Saturday morning, April 5, 2014 from 9:30 to 11:30 a.m. at the Cleveland Airport Marriott to learn more about essential tremor. We’ll discuss the diagnosis process for ET, what treatments are currently available, and what is going on in ET research. Plus, we’ll have a special presentation on occupational therapy and assistive devices.

This is one ET presentation you are not going to want to miss. And it’s free to everyone who wants to learn more, so bring your friends and family along. Just visit www.essentialtremor.org/seminars for registration information and driving directions. I look forward to meeting you!

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.

IETF Ambassador Makes the News

Joe Bremhorst, an IETF Ambassador, was featured in a recent news story to give his review of the Liftware spoon, a tremor-cancelling spoon from Lift Labs.

“It’s dampening my tremor tremendously,” Joe says in the story. He calls the Liftware spoon amazing and a lifesaver.

The IETF is glad to hear of Joe’s remarkable success he’s had with the Liftware spoon, and we hope many people with essential tremor will find the device as life-changing as Joe does. Liftware may be pre-ordered now, and Lift Labs will begin shipping the spoons in December.

Read more about this and other essential tremor stories in the news here.