Last 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 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.
Dive 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!
All 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/.
A 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.
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.
Dr. Jeff Elias (center) and the patients who participated in the essential tremor study at UVA
The New England Journal of Medicine published the results of the pilot trial for the use of focused ultrasound to treat patients with essential tremor. These Phase I results indicate that focused ultrasound can safely and effectively treat targeted areas deep in the brain. In focused ultrasound, more than 1,000 ultrasound waves are focused to a single site in the thalamus for the treatment.
The study included 15 patients with essential tremor that could not be managed by medication. Jeffrey Elias, MD, neurosurgeon at the University of Virginia and IETF Medical Advisory Board member, is the lead investigator of the study.
Phase I findings:
Dominant hand tremor improved by 75 percent.
Substantial improvements in daily disabilities (85 percent) and quality of life as assessed by clinicians and patients.
Outcomes and complications were comparable to surgical procedures for tremor, including radio frequency thalamotomy and deep brain stimulation.
Phase III of this study will begin soon. For information on how to register, visit clinicaltrials.gov.
The IETF will continue to watch as results of focused ultrasound studies are posted. Large, randomized controlled trials will be required to assess the procedure’s efficacy and safety.
Watch a video featuring Billy Williams, the first patient treated with focused ultrasound for essential tremor.
Recently we got this great news from one of our most supportive voices and ardent supporter – Joy Schaaf. We congratulate Joy on her great video and all the support she has provided in the last two years. For more about Joy visit, http://www.essentialtremor.org/read.asp?docid=907 and her story appears 3/4 the way down the page.
Dear IETF and Friends,
Joy Schaaf is at it again. Spreading awareness through a skit. Ohio has a 4-H Health and Safety Skit Competition. Joy and her sister Hope wrote a skit about her essential tremors. They won at county level and then again at regional level. Tomorrow they will be attending the Ohio State Fair for the final round in the competition. Last year it was taped and put on the internet. We are hoping it will be taped again. If she wins and if it is taped, we will let you know where you can watch it. Information from your website was very helpful in the writing of this skit and all information obtained was sited correctly.
Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.
Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!
In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.
Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at firstname.lastname@example.org.