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.
Lift Pulse 2.0, a smart phone app created by Lift Labs, has released the results of data gathered from users since updating the app in June 2013. Lift Pulse 2.0 includes a journal feature that measures and records tremors. It also records what medications you’re taking for tremor and how you’re doing with sleep, exercise and stress. The app stores your journal entries anonymously in Lift Lab’s private database. You have access to this data through your phone and computer, and Lift Lab analyzes it to provide you with information on how different factors affect your tremor.
Among the data extracted from users of Lift Pulse 2.0, Lift Labs found:
The most commonly used prescription is Propranolol (Inderal®), followed by Primidone (Mysoline®).
Exercise exacerbates amplitude of tremor.
People who reported less stress have less severe tremor symptoms.
Lift Pulse 2.0 users have measured their tremor almost 4,000 times so far, and that number continues to grow, according to Lift Labs.
Lift Labs, an IETF partner, focuses on healthcare and consumer devices used by individuals with motion disorders such as Essential Tremor. Lift Pulse 2.0 is available from iTunes and Google Play.
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!
We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.
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.
We will be facilitating another free ET education event/seminar on August 10 in Milwaukee. Come join us as we get together with the ET community to learn more about the diagnosis process and treatments available from Drs. Karen Blindauer and Peter Pahapill of the Medical College of Wisconsin. Follow this link www.essentialtremor.org/seminars to register online or call toll-free at 888-387-3667. We look forward to seeing you there!
Follow the progress and learn more about Brain Research through Advancing Innovative Neurotechnologies – the BRAIN Initiative – at www.nih.gov/science/brain/index.htm. This is an extremely important project because it accelerates our understanding of how the brain works. This in turn will help advance research that develops new interventions for conditions and diseases – like ET! The new tools and technologies that will be developed will lift all research to new levels and provide breakthroughs in the future that enable the development of better treatments and cures to be found.