HopeNet - Hope Nomore Essential Tremor

HopeNet - Hope Nomore Essential Tremor HopeNet is a 501(c)(3) not-for-profit that works to raise awareness of Essential Tremor (ET) within the medical community and the public.

One of HopeNET’s objectives is to increase awareness of Essential Tremor (ET). There is a tremendous need to increase awareness of ET, because even though it is the most common form of tremor, few people know what it is. Many people confuse Essential Tremor with Parkinson’s Disease, which almost everyone has heard of. Without greater awareness, Essential Tremor will not get the needed money for re

search that will lead to better treatments and ultimately a cure. It is a daunting task to increase awareness of a condition that so few know exists. Our strategy is to focus our efforts, targeting specific groups rather than attempting to reach out more broadly. DISCLAIMER: No endorsement is intended or made of any hypertext link, product, service, or information either by its inclusion or exclusion from this page or site. While all attempts are made to insure the correctness and suitability of information under our control and to correct any errors brought to our attention, no representation or guarantee can be made as to the correctness or suitability of that information or any other linked information presented, referenced, or implied. Information is not intended nor implied to be a substitute for professional medical advice

04/21/2021

From a friend of HopeNet:

My name is Doris Aldrich Smith. I have had ET for sixty years, with my head shaking back and forth, indicating no, no, no. It began in my first year of college. What introverted, shy eighteen-year-old wants to be asked if she is cold, nervous, or under the influence? Many of you relate to that. Now in my seventies, my hands are beginning to shake. We all have our own places in our body where the tremor resides and shakes. Since I retired I have been writing books which are published on amazon.com.

My latest book is “Why Is It Essential? I Want to Know! Insights from Those with Essential Tremor.” There are few books on essential tremor that deal with the embarrassment and pain the patients endure. This book has information about those personal insights and how we deal with them. There is comfort in knowing we are not alone. If your family or friends don’t understand ET, this book might help. I hope you will check it out.

“Why Is It Essential? I Want to Know!” is available at amazon.com in paperback ($8.99) or Ebook ($.99).

I enjoy hearing from my readers on Facebook or website: dorisesmith.com
Doris Aldrich Smith, Fort Wayne, IN (author)

Learn about COGNET a new ET study:
02/15/2021

Learn about COGNET a new ET study:

Here is a presentation about COGNET: A New ET Research Initiative at UT Southwestern Medical Center.

02/04/2021

We wanted to alert you to recent changes planned for implementation under the Centers of Medicare and Medicaid Services (CMS) Part D Payment Modernization Model.

Medicare Part D, also called the Medicare prescription drug benefit, is a government program to help Medicare beneficiaries pay for self-administered prescription drugs through prescription drug insurance premiums. The Part D Payment Modernization Model is a voluntary program that tests new Part D payment structures to address rising costs in the Part D program. While new payment performance tests may be well intended, the new changes announced by CMS may undermine a vital component of Medicare's Part D program, the “six protected classes” policy.

Recognized as an essential patient safeguard in Part D since the inception of the program, the policy requires that plans cover all or substantially all medications within six classes, including antidepressants, and has long stood as a guarantee to Medicare beneficiaries reliant on these medications that their access to would never be in interrupted. However, without intervention, effective January 1, 2022, CMS plans to allow participating Part D plans to include on their formulary (i.e., the medications covered by that plan) only one drug per class. Such a change could have serious health consequences for this patient population.

Weakening the six protected classes policy will harm Medicare beneficiaries, an already vulnerable patient population, including seniors and patients with disabilities, that is more likely to be afflicted with multiple chronic conditions and whose complex conditions often require broad access to the medications that work for them, as prescribed by their healthcare provider. Not all patients respond to medication in the same way and allowing Part D plans to implement narrow formularies will be particularly detrimental. Patients with a brain health disorder often try several medications before finding a therapy that helps control their symptoms and has manageable side effects.

Protecting patient access to a full spectrum of the most clinically appropriate care is critical, particularly during the COVID-19 pandemic, when there is an urgent need for increased access to care. There is no “one size fits all” approach to this vulnerable patient population, and we are urging policymakers to maintain beneficiaries’ access to protected class drugs to ensure timely and quality care.

If you would also like to raise your voice to oppose these changes to Medicare Part D, you can do so by contacting your local Representative in Congress, or submit comments to this email address [email protected] by February 5th.

01/22/2021

A message from a friend of HopeNET:

WOULD YOU HELP?

What if I told you that your story of living with essential tremor might give someone else hope? What if you have a story of accomplishment or a funny incident related to your tremor that would give others comfort or strength?

I am writing a book, WHY IS IT ESSENTIAL? I WANT TO KNOW!
The Secrets Held by Those with Essential Tremor

Would you share a story with me for my book? I can list your name or you can be anonymous.

Choose a topic or two and write under 200 words for each:
1. How does it interfere with your life?
2. How does it affect your family, friends, or job?
3. Has ET created any barriers for you? How?
4. Has ET opened up any opportunities or interesting exchanges with others?
5. Do you have words of wisdom for others dealing with ET?

Please return your story by March 15, 2021, to [email protected]. (Please put ET in the subject line.) Thank you. If you give me your mailing address, I will send you a free copy of the book mid-summer.

(You can find me on Facebook, Doris Aldrich Smith and www.dorisesmith.com. I have 14 books on amazon.com.)

01/18/2021

This quick starter by Dr. Fatta B. Nahab, M.D. posted on our website discusses the early state of research on Cannabis and Essential Tremor. Find it here: https://thehopenet.org/blog2/4394-2/

We wanted to share with you our recent press release on an important Sage announcement regarding a global collaboration ...
12/03/2020

We wanted to share with you our recent press release on an important Sage announcement regarding a global collaboration between Sage and Biogen related to SAGE-324.

We are excited about this collaboration, as it aligns the efforts of two companies committed to patients and driven by a passion for brain health.

Biogen Inc. (Nasdaq: BIIB) and Sage Therapeutics, Inc. (Nasdaq: SAGE) announced that they have executed a global collaboration and license agreement t

HopeNet Founder Peter Muller was one of the first to have Focused Ultrasound in the US.  The study of the results of the...
12/01/2020

HopeNet Founder Peter Muller was one of the first to have Focused Ultrasound in the US. The study of the results of the FUS on his Essential Tremor have been published and can be found here:

View Supplementary Video S1 View Supplementary Video S2

Health Savings Account or Flexible Spending Account funds can be used to purchase Cala Trio™ therapy  Cala Trio is an ef...
11/20/2020

Health Savings Account or Flexible Spending Account funds can be used to purchase Cala Trio™ therapy

Cala Trio is an effective, easy-to-use, prescription therapy that reduces hand tremor. See if the therapy is right for you and utilize your Flexible Spending Account* (FSA) or Health Savings Account** (HSA) funds.

The end of the year is quickly approaching! If you have a FSA account, your healthcare flex spending dollars may expire at year end. Check with your individual plan for detailed information.

Get your prescription today! Download the Doctor Discussion Guide and talk to your doctor in person or by telehealth about Cala Trio. Get the guide here:

The doctor discussion guide is designed to assist you when you talk to your doctor about incorporating Cala Trio™ therapy into your treatment plan. It provides information about essential tremor, Cala Trio, topics to discuss with your physician when you meet with them, and the Cala Trio prescripti...

10/13/2020

We have been very successful having a meeting of a combination of all HopeNET support groups using Zoom. It is held the first Wednesday of each month at 1 pm (Eastern time). For each meeting, we have a prominent speaker involved with a wide range of issues involving Essential Tremor. On October 7, it was Dr. Kate Rosenbluth, founder & Chief Science Officer of Cala. You are welcome to participate..To register contact me at [email protected] or 804-754-4455. After registering, I will send you the link on the Monday prior to the call.

10/11/2020

Renee was a member of HopeNET's Silver Spring support group.. I just had an exchange of emails with her daughter, Jodi - listed below. I really did enjoy having Renee at our meetings. I want to take this opportunity to remember the many in our support groups that are no longer here. They helped to make HopeNET what it is today.

Please remove Renee Lipson from your email list. She passed away this spring. Jodi Lipson

I have. I'm sorry to hear this. I miss her. She contributed to our meetings.

She loved you and your group. Thank you for adding to her life. Best to you.

08/27/2020

Dr. Elble discusses what ET is, and what it isn't. Important information for those dealing with or studying ET.

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