Mark Your Calendar for April 3rd!

Save the date for our next Essential Tremor Support Group meeting which is scheduled for Saturday, April 3rd, from 1:00-3:00 p.m. via Zoom. Our speaker and topic will be announced shortly; and we do hope you’ll plan to join us!

Please Join Us For Our Virtual Meeting on February 6th

Saturday, February 6, 2021
1:00 – 3:00 p.m.
Virtual Meeting via Zoom

Meet Biotech Company Praxis…
and learn about Investigational Drug PRAX-944

presented by Gabriel Belfort M.D., Ph.D. and Lisa Huang, Ph.D.

At this virtual meeting, you will learn about Praxis, a biotechnology company studying an investigational treatment for Essential Tremor. PRAX-944 belongs to a new class of drugs called T-type calcium channel blockers. It has been shown to be effective in animal models of Essential Tremor by blocking calcium channels that are essential to the rhythmic brain activity that causes tremor activity. If PRAX-944 can similarly block T-type calcium channels in patients with ET, it is possible that the abnormal rhythmic activity in the brain – and the subsequent tremors – may improve! Studies with PRAX-944 in ET patients have been initiated. You won’t want to miss this meeting to learn more!

Gabriel Belfort, M.D., Ph.D., is a Senior Medical Director at Praxis and is responsible for the design, conduct, and data analysis of studies in the PRAX-944 Essential Tremor program. He has been in the industry for eight years and with Praxis for two. He received an M.D. and a Ph.D. from Boston University, residency training in neurology from the Beth Israel Deaconess Medical Center, and postdoctoral training from MIT. Gabi was involved in the development of Brexanolone, now FDA approved for the treatment of post-partum depression.

Lisa Huang, Ph.D. is the commercial lead for the PRAX-944 Essential Tremor program. She has been in the industry for eight years, where she founded a number of biotechs, such as Magenta, Gemini Therapeutics, and Q32 Bio Inc. to address diseases with high clinical need. A human geneticist by training, Lisa obtained her PhD Degree from Johns Hopkins.

Inquiries are invited!
Registration is required no later than noon on Wednesday, February 3rd!

To register or request information, email Helen Moser or submit the form below.

The CT essential tremor support group is sponsored by

IETF logo tagline 10162012

 

Save the Date!

Whether it’s to be in person or via Zoom …that unfortunately is still the question! But in either event, we do hope you’ll plan to join us from 1:00 – 3:00 p.m. on Saturday, February 6th for our next CT Essential Tremor Support Group meeting. Details will be announced shortly.

Join Us on December 5th for Two Exciting Presentations via Zoom!

Saturday, December 5, 2020
1:00 – 3:00 p.m.
Virtual Meeting via Zoom

Advancing DBS Therapy to Treat Essential Tremor
presented by Movement Disorder Neurologist Dr. Drew Falconer
~and~
Steadi-Two, Steadiwear’s second-generation tremor stabilization device
presented by Steadiwear Founders Mark Elias and Emile Maamary

At this virtual meeting, Dr. Falconer will discuss the latest advancements to Abbott DBS and the innovations in the way the therapy is delivered and how it is controlled.

Dr. Drew Falconer is Board Certified in Neurology and is a fellowship-trained Movement Disorders Specialist at Georgetown University. Currently he serves as Co-Medical Director at the Inova Parkinson’s and Movement Disorders Center in Virginia. Dr. Falconer specializes in advanced care of patients with essential tremor, Parkinson’s Disease, and other movement disorders. He became interested in neurology and movement disorders after seeing the impact that quality, compassionate care combined with cutting-edge pharmacology and technology could have on a patient’s condition. His goal is to work with his patients to restore the quality of life they deserve.

~then~

Mark Elias and Emile Maamary will explain Steadiwear’s flagship product Steadi-One, an FDA registered Class I medical device that stabilizes the wrist joint for individuals with essential tremor. The battery-free Steadi-One technology was inspired by leading-edge earthquake dampers used in buildings.

Steadiwear Steadi-One Glove

…and present the Steadi-Two, a miniaturized version currently under development with very promising results! It is still battery-free and will be based on magnetic tuned damping technology, a novel class of stabilization systems. The system will weigh under 1 pound. A live demonstration of the Steadi-Two device will be conducted with a vibration simulator. PS: Mark and Emile will also announce plans for their Steadi-Two clinical trial, as well as an exciting opportunity for individuals who participate in its beta release!

Steadiwear Steadi-Two Glove

The Steadiwear Team: Mark Elias – CEO and Co-Founder – has a background in structural engineering and entrepreneurship, while Emile Maamary – CFO and Co-Founder – has a background in marketing and management. After being introduced as neighbors in 2014, the founders discovered that both their families suffer from tremors. A sense of compassion has united them and fueled their resolve to change the game for tremor sufferers by developing groundbreaking tremor stabilization technology. Both Mark and Emile have been working on Steadiwear full time since January 2016.

Inquiries are invited!
Registration is required no later than noon on Wednesday, December 2nd!

To register or request information, email Helen Moser or submit the form below.

The CT essential tremor support group is sponsored by

IETF logo tagline 10162012

Please Join Us for Our Virtual Meeting on October 3rd!

Saturday, October 3, 2020
1:00 – 3:00 p.m.
Virtual Meeting via Zoom

Updates on Essential Tremor
presented by Movement Disorder Neurologist Dr. Leon Meytin

At this virtual meeting, Dr. Meytin will discuss some of the new updates in essential tremor, including several clinical trials currently ongoing, as well as recently published data on non-invasive treatment for essential tremor.

Dr. Leon Meytin, MD, a Board Certified Neurologist, is a fellowship trained Movement Disorder Specialist at Hartford Healthcare. After graduating from West Virginia University School of Medicine, Dr. Meytin completed his neurology residency at Thomas Jefferson University in Philadelphia, PA, followed by a Movement Disorders Fellowship at Mount Sinai Beth Israel in New York, NY.

Dr. Meytin was recently hired by Hartford Healthcare to start a Movement Disorders Center in Stamford, CT as part of Hartford Healthcare’s comprehensive Chase Family Movement Disorders Center. He believes in the holistic approach to treatment, including utilizing physical/occupational therapy, exercise, acupuncture, and social work to treat the entirety of the patient. A member of the American Academy of Neurology and Movement Disorder Society, Dr. Meytin is also fluent in Russian.

Inquiries are invited!
Registration is required no later than noon on Wednesday, September 30th!

To register or request information, email Helen Moser or submit the form below.

The CT essential tremor support group is sponsored by

IETF logo tagline 10162012

Save October 3rd in Your Calendar!

Whether it’s to be in person or via Zoom …that is the question! But in either case, please plan to join us from 1:00 – 3:00 p.m. on Saturday, October 3rd for our next Essential Tremor Support Group meeting. We’ll get details to you as soon as possible.

Please Join Us for a Virtual Meeting on August 1st!

Saturday, August 1, 2020
1:00 – 3:00 p.m.
Virtual Meeting via Zoom

How New Drugs Are Developed, plus an
Update on an ET-specific drug tested in Clinical Trial
presented by Tim Piser, PhD and Amber Trzeciak, MS

Tim Piser, PhD, is the Chief Scientific Officer at Cadent Therapeutics. Tim earned his PhD in pharmacology from the University of Minnesota. He has passionately pursued the discovery and development of neuroscience therapeutics for almost two decades in big pharma and in biotech, most notably at AstraZeneca and FORUM Pharmaceuticals. There, he led neuropharmacology teams and both NDA and nicotinic receptor drug discovery projects and product development teams from lead optimization through Phase 2 trials. Tim leverages collaborative scientific insight and quantitative translational pharmacology to find innovative paths to discover and develop potential breakthrough medicines.

Amber Trzeciak, MS, is Cadent’s Patient Partnership and Advocacy Manager, as well as Executive Assistant to its R&D Department.

At this virtual meeting, Tim and Amber will educate us on how new drugs are created and developed. They will also give us a history of Cadent’s CAD-1883 (an ET-specific drug that has been tested in clinical trial), together with an update on this trial.

Inquiries are invited!
Registration is required no later than noon on Wednesday, July 29th!

To register or request information, email Helen Moser or submit the form below.

The CT essential tremor support group is sponsored by

IETF logo tagline 10162012

We’re back on August 1st! …Virtually!

After the too-long hiatus created by Covid-19 and the need to cancel our large in-person meetings, we’ve decided to go virtual… and we have an exciting presentation scheduled for our August meeting!

Please plan to join us from 1:00-3:00 p.m. on Saturday, August 1st for our first Zoom meeting. If you haven’t used Zoom, don’t be intimidated by the thought of a virtual meeting. Zoom is easy to use and there are plenty of tutorials available online. You can even Google something like “Zoom for Beginners” or “Zoom for Dummies” if you want to keep the instructions short and simple…. and if you don’t have a camera on your computer, you can also participate by just calling in on your phone!”

…so please save the date and watch for details to be posted soon!

April 4th Meeting Rescheduled!

Please note that the word is RESCHEDULED, not cancelled!

With several cases of COVID-19 (Corona Virus) confirmed in Connecticut – and given our nation’s current state of emergency and CDC guidelines – we have rescheduled our April 4th meeting. (Because the ability to actually see and try the various state-of-the-art assistive devices currently available is so exciting, this agenda is far too important to simply cancel.)

Our June 6th meeting is already booked with another important agenda (details to be announced shortly) …so our Assistive Devices agenda will be rescheduled to our August 1st meeting.

Please be sure to mark your calendars for both June 6th and August 1st because you won’t want to miss either topic …and please stay safe and healthy!

April 4th: A Unique Meeting and a Special Opportunity!

You won’t want to miss our April 4th meeting….it’s a unique format and an awesome opportunity to literally see and try several different assistive devices!

Samples (and in some cases, reps) will be available from:

  1. LiftWare
  2. Tremelo
  3. Steadi-One Glove
  4. Cala Trio
  5. Steady Type
  6. plus a rep from Encora Inc, the group of MIT graduates who will be recruiting people in our area to participate in their study for the development of a new wrist device! (Although based in the Boston area, they are willing to schedule tests in Connecticut.)

…and we’re still working on trying (and hoping) to get participation from the Readi-Steadi glove.

After a brief presentation on all of the above devices, we’ll have each device (and a rep/facilitator) set up at different tables with plenty of time for each of you to have the opportunity to really try and determine which of these amazing developments might be appropriate and life changing for you!

Details of the meeting:

  • Date and time: Saturday, April 4th, 1:00-3:00 p.m.
  • Location: Main Floor Conference Room at Hartford HealthCare Health Center – Cheshire (this is not a hospital, but the beautiful new facility that houses the Cheshire offices of Hartford HealthCare’s Ayer Neuroscience Institute Movement Disorders Center as well as other outpatient programs)
  • Address: 280 South Main Street, Cheshire, CT 06410
  • Parking: large outdoor lot on premises
  • Click here for a map and driving directions

    Registration is requested – Inquiries are invited!

    To register or request information, email Helen Moser or submit the form below.

    The CT essential tremor support group is sponsored byIETF logo tagline 10162012