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.

Results From Focused Ultrasound Study

 

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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.

Joy Schaaf in the News!

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.
Sincerely,
Teresa Schaaf

They didn’t win, but they did an excellent job! You can watch the video online at the following link: http://www.ohiochannel.org/medialibrary/Media.aspx?fileId=139803. The skit “Essential Tremors” is halfway through all the videos at 47:45 min. Check it out!
Teresa

Chicago Bound Round 2

Dr. Dalvi and the ET patients from the Tinley Park area were together again last Saturday at the Holiday Inn and Convention Center. We had a group of about 30 people and everyone learned a great deal with comments like, “I learned more in the last hour and I have in the 30 years I have had ET” and “definitely worth while”. But the conversation I had with a local police officer who had essential tremor was shocking. He told me a story of how his local neurologist couldn’t find test results to support his essential tremor so basically accused him of faking it and not wanting to go to work. For those that aren’t aware, there are no medical tests that exist to confirm the diagnosis of ET. It is diagnosed by medical history and neurological evaluation. To read more about ET go to our website.

Dr. Dalvi was joined by Dr. Peter Warnke, Associate Professor of Surgery and Neurology and Director of the Stereotactic and Functional Neurosurgery Program at the University of Chicago to answer questions about deep brain stimulation for essential tremor.

We also took the opportunity to show the audience a draft copy of the upcoming ET video developed to create ET Awareness. The attendees were in agreement the video is badly needed and gave praise at how well it was done. Check out the making of the video. Our “stars” had so much fun!

The final version should be live on our website sometime next week.

This week I am Phoenix bound. Can’t wait to see all the folks in Phoenix!

Studio Production Continues on ET Awareness Video

Yesterday, I spent several hours editing in the Mile Deep Films studio with director/producer Tony Ladesich, who is producing the ET Awareness video for the IETF.

The video features interviews with several individuals with ET from Chicago and greater Kansas City, Dr. Arif Dalvi (left), Director of the Movement Disorder Center, North Shore University Health Systems, and Cindy Zadikoff (below), Assistant Professor of Neurology, Northwestern University, Parkinson’s Disease and Movement Disorder Center.

The participants with ET explain how it has affected their life, how they have learned to adapt and cope, and why raising awareness is so important.

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