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.”

Liftware Device Donations

Liftware-DeviceLast fall, Lift Labs introduced Liftware, a device designated to help people whose hand tremor gets in the way of simple tasks like eating. In honor of National Essential Tremor Month in March, Lift Labs was able to match contributions made through an Indiegogo campaign, dollar for dollar.

As a result, Lift Labs went above and beyond the goal of $7,500 and raised over $17,000 allowing them to send several free devices to the IETF to provide to those in economic hardship. Due to the overwhelming success, Lift Labs is continuing the campaign to push for $20,000.

The device retails for $295. If you would like to be considered to receive a donated Liftware device, please complete an application online. Or help contribute to the campaign by visiting: https://www.indiegogo.com/projects/lift-labs-march-match.

Coping Tip: Poppin Pen May Prove Useful

Poppin PenIETF member Tracy Joslin often found her shaky hands to be an obstacle when taking meeting notes, writing checks at stores or filling out forms at doctor appointments — until she discovered the Poppin Pen. These heavy-weighted, metal, ball-point pens provide her the stability she needs to accomplish everyday writing tasks. “My penmanship used to be perfect, and it is nice to gain some control back,” says Tracy.

At a retail price of $14, Tracy highly recommends the pen for ET patients who struggle with hand tremors when writing. “The pen is also helpful to hang onto during a client meeting when I try to keep my hand from shaking when not writing, just so they cannot see,” says Tracy. Pens can be purchased at http://www.poppin.com/Writing/Metal.

Do you have a coping tip to share? Let us know on our Facebook page. Learn more about other ways to cope with the challenges of ET in everyday tasks at: http://essentialtremor.org/coping/.

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.