Inspired by You, Cala Health is Working with IETF to Raise Essential Tremor Awareness

By Kristie Burns,
Chief Marketing Officer – Cala Health

For five years, Cala Health has focused on building a therapy—the Cala Trio™—designed especially for the essential tremor (ET) patient to get control of hand tremors. Our campaign, “Freedom to Be,” was inspired by the wide variety of patients we met who want to get back to doing the thing they love to do. Painters, musicians, photographers, people who enjoy cooking and writing, socializing with friends in public, and being their best self.

Photo of Kristie Burns

As part of the Cala Health leadership team, I’ve met many patients. They face each day with perseverance, optimism, and understandably frustration. Please know you have motivated our team. Each patient’s story is unique. Each patient’s experience pushes us to evolve the treatment so that we can help even more ET patients. We are working hard to increase access with financial assistance through insurance coverage and additional international regulatory approvals.

The International Essential Tremor Foundation (IETF) community’s incredible enthusiasm for Cala Trio led to an overflow of volunteers in the largest essential tremor therapeutic trial ever conducted, PROSPECT. Over 260 patients at 26 centers around the U.S. enrolled in six weeks. The data from over 21,000 therapy sessions collected during the study are analyzed; initial reports were accepted and presented at three international meetings with more reports submitted. Thanks to the IETF community, we are learning more about this debilitating condition.

Cala Health is committed to raising the curtain on essential tremor with health reporters and news outlets educating the public on the most common movement disorder. This month, you might see this article in your local newspaper [link] or our posts on social media for National Essential Tremor Awareness Month. When invited, Cala is always thrilled to participate in support group meetings, local health fairs, and educational meetings for patients and loved ones.

Some of us have had the honor and responsibility of introducing new medical technologies to patients and clinicians for 25 years. Please know that you inspire and motivate us to do our best work. To learn more about Cala Trio, please visit www.CalaTrio.com

The team at Cala Health.

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School and Social Activities Were Nightmares for Me As My Peers Would Ask About My Shaking

March is National Essential Tremor Awareness Month and throughout the month we will be “raising the curtain on essential tremor” to help others understand what it is and the challenges people with essential tremor face. Everyone has a story to tell. Please share these stories with others.

By Loide Nampala

I am Loide Nampala. I am 23 years of age and from an African country Namibia. I would like to share my story for essential tremor awareness month to #RaiseTheCurtainOnET.

As a baby I had epilepsy. Then in my toddler years shaking began in my hands. As I got to pre primary school it affected my writing and social skills to the point where I tried to hide it. But I did this by making my body stiff so my peers always would ask questions wanting to know if I was sick or cold or nervous. I also developed a feeling of being scared of the unknown and always living in fear. As I was growing in years the tremors got worse in my primary and high school year, when it went to my legs and body. My parents took me to the hospital where I went through psychological treatment, which didn’t work.

School and social activities were nightmares for me as my peers would always ask me about my shaking, and sometimes laughed at me. I pretended to be sick and skipped school just to avoid being bullied. I did very bad in school and always repeated grades as I tended to avoid being bullied or asked questions. I avoided social activities even though I had the passion to take part in debate. It got to the point where I thought I was crazy and went to the mental unit to talk to a psychiatrist who then diagnosed me with generalized anxiety disorder. I was also referred to a neurologist for the shaking and was diagnosed with essential tremors and dystonia.

I just want to be at that point where I can live in the moment by accepting my condition because it limits me from daily activities and my goals.

I would like to ask to be part of a support group besides the one on Facebook so I can connect with people with the same condition as me. I would also like to take part in all activities and awareness programs.

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Industry and Advocacy Working Together to Raise ET Awareness

By Ramya Singh, Vice President – Americas
INSIGHTEC

March is National Essential Tremor Awareness (NETA) Month, a time specifically dedicated to educating the public on what living with the most common movement disorder really looks like. The team at INSIGHTEC focuses on this throughout the year as the innovator of focused ultrasound technology, an incisionless treatment option for certain people living with ET who do not respond to medications.

photo of Ramya Singh with Insightec

I just had a phone call from a woman desperate for information to help a friend of hers who is living with essential tremor, which is impacting his ability to live independently. We are inspired everyday by stories of courageous people sharing their experiences living with essential tremor. Our campaign this year is based on “Get a Grip on ET” and we are working alongside the International Essential Tremor Foundation with their efforts in “Raising the Curtain on Essential Tremor” so their voices are heard far and wide.

We share the stories of patients like Gregg. When Gregg’s essential tremor worsened, his livelihood as an electronics technician was threatened as he lost ability to use tools like a screwdriver. Determined not to let his hand tremor get in the way of his career, Gregg had the focused ultrasound treatment. Ever since, Gregg has been able to get back to performing everyday tasks with ease and can continue doing the job he loves.

There is not just one story, but thousands: Karen who went to the beach the day after focused ultrasound treatment . . . Haya who was able to get back to baking . . . Alexandra who is still amazed by her steady hand . . . Gary who was able to write a hand-written letter to his sister . . . Beverly who is back engaged with her photography . . . Bob who has been sharing his experience on Facebook.

By amplifying individual stories in awareness campaigns, we strive to increase understanding of essential tremor. We support the goal of “Raising the Curtain” to educate the public so they do not think that a person with tremor is nervous or drunk. We want people to recognize essential tremor is a challenging condition, but we also want to emphasize it is not the only thing that defines a person.  

Do you or someone you love live with essential tremor? We invite you to share your passion and what is essential to you in order to help more people understand that ET does not have to be the central part of one’s identity.

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Let’s ‘Raise the Curtain’ on Essential Tremor

It’s a fact: most people don’t know what essential tremor (ET) is. When they see someone shaking, they assume it’s “old age setting in,” or nervousness or anxiety. Once they know the truth, and learn about essential tremor, judgment goes away and understanding and compassion take over.

For this year’s National Essential Tremor Awareness Month in March, the International Essential Tremor Foundation chose the theme, “Raise the Curtain on ET.” While as a foundation we work every day to raise awareness and increase understanding of ET, March is a time when we work to rally everyone in the ET community to join us to make an impact. Let’s “Raise the Curtain!”

raise the curtain

  1. To make (something) publicly known; to reveal or disclose the truth (about something)

How can you do this? There are numerous ways. First, make it your personal goal to EDUCATE SOMEONE about essential tremor. Explain what it is and what is does. . .how it affects you. Since there are an estimated 10 million people in the United States alone who have ET, if each of these people reaches out to just one person, we will have educated 10 million more people. And if each of those 10 million people educate one more person. . . . well, you see the trend.

SHARE YOUR STORY with us. We will be posting a series of blogs on our Tremor Talk blog site. Talk about your personal struggle, or how you have worked to overcome your ET. You could share coping techniques, assistive devices or medications that work for you. (Email your story to tammy@essentialtremor.org). Or simply share your story in the comments section when you read other blogs.

ORDER A FREE ET AWARENESS POSTER and hang it in a public place. The IETF developed new posters this year that clearly define ET and provide facts (again, dispelling any myths out there). So far hundreds have been mailed out to individuals who report they are displaying them in their workplace, local hospital, doctor’s office, community center and grocery store, among other places.

DOWNLOAD OUR SOCIAL MEDIA BANNERS and add them to your own personal social media sites. These visual elements can be conversation starters for your social media followers. And watch our social media sites (Facebook, Twitter, Instagram and LinkedIn) to “LIKE” AND “SHARE” OUR POSTS. We will be posting a series of 31 FACTS ABOUT ET – one each day during March. These facts can help educate others and can help eliminate stigmas.

NETA Month t-shirt and tote

GET A “RAISE THE CURTAIN ON ET”
T-SHIRT AND TOTE BAG by making a donation to the IETF. For a $30 donation you will receive the t-shirt. For a $50 donation, you will receive both the t-shirt and tote bag. Use these to spread awareness about essential tremor all year long.

By working together, we can truly make an impact and raise awareness and understanding of ET. Let’s raise that curtain!

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Shine a Light on Essential Tremor

“Be the light that helps others see.” Anonymous

By Tammy Dodderidge
IETF Marketing and Communications Manager

Just when we thought we had heard every symptom and every challenge associated with essential tremor, we realized we were wrong. When we reached out to the essential tremor community last month and asked people to share their stories as part of National Essential Tremor Awareness Month (NETA), we received a number of responses. People sent us moving accounts of their diagnoses and their challenges. The stories are insightful and emotional, mixed with both sadness and hope. Most importantly, they are REAL.

Logo for NETA Month 2019We will be sharing these stories on this blog site throughout the month of March. Our goal is to “shine a light on essential tremor,” which is the theme for this year’s NETA Month campaign. We know when we shine our light, we heighten awareness and brighten hope. We connect people so they don’t feel alone, and empower them to speak up and educate others.

Here’s a sampling of the personal stories we will be sharing through this Tremor Talk blog site during March:

The Story of Anna. Anna thought being pushed out of a tree when she was 10 years old is what caused her tremor to begin. Growing up, she would shake her leg to try to disguise her tremor as nervousness. There have been times throughout her life when she has felt like a “freak” because of her ET.

The Story of Lucy. Lucy is an 84-year-old widow with essential tremor “everywhere.” She was actually able to hide it from her husband until he passed away. She struggled to find a doctor who would diagnosis and treat her.

The Story of Jody. Jody works two jobs so she works seven days a week. She has learned to make accommodations for her tremor. Some days her muscles hurt and her whole body hurts, but she is thankful she can still move.

The Story of Rachel. Diagnosed at age 5, Rachel has made it one of her goals in life to raise awareness to ET any way she can. From creating videos, to making presentations to being an ET Support Group leader, she is not giving up hope that someday there will be a cure for ET.

There are many other stories as well. The mission of the IETF is to provide HOPE to people with ET through awareness, education, support and research. March is our biggest time to shine a light on ET, and we hope you will join us by taking part in some way.

Be sure to take a look at our webpage where we have shared our NETA Month posters, banners and other materials, as well as ideas. Make a donation to receive an NETA Month t-shirt and tote bag, which will help raise awareness all year long. And stay tuned to this blog site to share your own comments and stories.

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IETF Welcomes New Executive Director

Catherine Rice webThe IETF Board of Directors announces that after 18 years of leadership, Catherine S. Rice is retiring as Executive Director of the organization.  Throughout her tenure, Cathy has increased the IETF’s reach to over 100,000 people around the world.  Cathy, along with now retired Kansas House Representative Dennis Moore, in 2010 achieved formal designation for the month of March as National Essential Tremor Awareness Month.  In the last 10 years, she has facilitated 380 free ET patient education events in cities across the U.S., educating over 35,000 people.  Cathy also established a college scholarship program for students having a diagnosis of ET, as well as an ET research grant program that has awarded $1 million, thus far, for promising ET studies conducted by medical investigators.  We cannot thank her enough for her vision, dedication, and commitment to the IETF.

Patrick photoTo continue our desire to further our mission, the Board is pleased to announce Patrick McCartney as the new IETF Executive Director, effective Aug. 17, 2015.  Patrick brings over 20 years of experience with non-profit organizations.  He most recently served as the Executive Director of the Kansas City Kansas Community College Endowment Association.  Previously, Patrick was Vice President of Marketing at the Kansas City Kansas Chamber of Commerce.  His work experience focused on board relations, fiscal management, marketing and communications, and fundraising.  Please join us in welcoming Patrick to the IETF.  With your support, we are confident that he will continue the excellence of the IETF.

One of Cathy’s passions at the IETF was to recognize the achievements of students dealing with ET.  To honor and help continue Cathy’s work with college students, the Board is pleased to announce the establishment of the Catherine S. Rice Scholarship Fund.  This fund will be used to award four scholarships to deserving students both in the fall and winter semesters.  For anyone wishing to recognize the dedication of Cathy, the Board encourages donations to this fund, in her honor.  Information about the fund is available at www.essentialtremor.org/scholarships or 1-888-387-3667. Donations and/or notes to Cathy can also be mailed to IETF, C/O Catherine S. Rice Scholarship Fund, PO Box 14005, Lenexa, KS  66285-4005.

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