Tremor Gram – January 2022

Watch for Clinical Trial Opportunities in Your Area

artwork for clinical trials

The IETF is pleased to start the new year with some exciting news in the area of essential tremor (ET) research. Several of our pharmaceutical partners are investigating new treatments for ET (two are detailed in stories in this issue of Tremor Gram). As part of that work, the companies are planning clinical trials to determine the safety and effectiveness of these treatments.

We are working closely with them to connect them with potential candidates to participate in their studies, so research can move forward. Watch your email and home mail for communication about clinical trials that may be taking place in your area.

Some studies pay for time and travel and all have lists of criteria for eligible participants.

A New Medication for ET Could Be on the Forefront

Talking-Essential-Tremor-Podcast-Art-Square

Our latest “Talking Essential Tremor” podcast focuses on a new drug that could change the lives of patients with essential tremor (ET).

Jazz Pharmaceuticals is investigating a drug that acts to modulate the activity of t-type calcium channels associated with ET. IETF Executive Director Patrick McCartney interviewed Jazz staff Michelle Baladi, senior director of global development, and Margaret Lee, head of neuroscience pharmacology, to learn about the investigational process and the work of Jazz.

Tune into “Talking with Jazz Pharmaceuticals About an Investigational Drug for ET” to learn more.

Our Talking Essential Tremor podcast library includes 16 recordings focusing on assistive devices, ET research, personal stories of hope and much more. Listen in at your leisure and watch for new ones each month.

Urge Congress to Support a Neuroscience Center of Excellence

Leaders of the Congressional Neuroscience Caucus and the Brain Injury Task Force are circulating a sign-on letter to the Energy & Commerce Committee in support of the creation of a Neuroscience Center of Excellence (NCOE) at the Food and Drug Administration (FDA). A Neuroscience Center of Excellence would help the more than 10 million people living with essential tremor by creating a more transparent and patient-focused process at the FDA to speed the delivery of safe and effective treatments to patients.

The Cures 2.0 Act, recently introduced by Congresswoman Diana DeGette and Congressman Fred Upton, includes language that would pave the way for the creation of a NCOE at the FDA. This language complements the Bringing Regulatory Advances Into Neuroscience (BRAIN) Act, advanced by Congressman Earl Blumenauer, Congressman Bill Pascrell, and Congressman Don Bacon, which would direct FDA to create a NCOE. 

Congress needs to hear from you now. Please urge your member of Congress to support the creation of a Neuroscience Center of Excellence by co-sponsoring the BRAIN Act and signing the letter in support of the creation of a Neuroscience Center of Excellence today.

Exploring New Therapies for Essential Tremor

An estimated 70 percent of people with essential tremor (ET) are undiagnosed, misdiagnosed or untreated. And nearly half of those prescribed with medication, stop taking it due to side effects or because it’s not helping them.

Praxis Precision Medicines is working to develop a new medication specifically focused on treating ET. In our latest ET Virtual Education Event, Gabi Belfort, M.D., Ph.D., vice president, clinical development sciences at Praxis, talks about their new investigational medication PRAX-944. Clinical trials are planned for the U.S. and Canada to study its safety and effectiveness. 

Watch “Exploring New Therapies for Essential Tremor” to learn more about this new research and how you can get involved.

Categories: Tremor Gram

39 thoughts on “Tremor Gram – January 2022

  1. Hard not to become jaded…. whatever happened to
    CX 8998? You posted a great video on that trial but no follow up. Exact type of medium – calcium channel.

  2. I live in The Villages in central Florida about an hour from Orlando. I would like to participate in a trial. Thanks!

    1. There will be a list of criteria that has to be met to participate. Some might talk about current drugs you are taking. Each trial is different.

  3. I am currently taking several drugs for my ET. I don’t want to go off these drugs. Would I still qualify for this study?

    1. Criteria will be listed for the clinical trials so this would be the place to look for that information. Watch your email or mail for information. We will be sending out communication to individuals who live in the areas where the trials will be taking place.

  4. An auto accident concussion has quadrupled my ET.
    I developed a dominant hand position that enables me to have some control while laying on my back awaiting sleep. The concussion has excited the trigger point in the left side of my brain with headaches on and off daily. A trial position my bring valuable information.

  5. Friends, commenting here will not sign you up for a study. You can go to the individual studies to see if you qualify and if there is a trial in your area. Go to jazzpharma.com, click on science and then on clinical trials. Fill out the form. Based on your zip code they will determine if there is a trial location near you. The other trial can be reached at essential1study.com to fill out their form. Sadly there was no study near me for either study.

  6. I have been diagnosed with Familial tremors. Only one, maybe two of eight children in our family and one of our two parents lack symptoms of these tremors. My daughter and twenty-one year old grandson are showing signs of the tremors also. I live in Ringgold, GA, just outside of Chattanooga, Tn. with easy access to both.

    1. Sometimes we share similar information in Tremor Talk, but not always. We share a lot of more in-depth pieces in Tremor Talk.

  7. Im in, i would love to try something. Im in Maryland, ive had tremors for 16 yrs. They started when i was going through spine surgeries or a little before. Mine are not well controlled, i don’t eat in restaurants when there’s alot of people because I drop alot of my food.

  8. I would love to be in the trail I live in Wentzville MO and have dealing with tremors for the last eight years

    1. Have you been to see a neurologist who specializes in movement disorders? We recommend this to anyone who thinks they have essential tremor. They can evaluate your tremor and will ask you some questions about medications you take, history of ET in your family, and much more. We have a list of these doctors on our website, but there are many, many more out there who are not on our list. https://essentialtremor.org/resources/living-with-et/find-a-physician/

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