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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Steadiwear is Raising the Curtain on Essential Tremor

Steadiwear has a personal interest in raising the curtain on essential tremor and helping those who have it live a better life.

Photo of Emile and Mark with Steadiwear
(From left) Mark Elias and Emile Maamary, the Steadiwear team.

While studying structural engineering at the University of Toronto, co-founder and CEO of Steadiwear Mark Elias visited his family over the winter holidays. As he was having coffee with his grandmother and discussing what his next steps were after graduation, he noticed a slight shake in her wrist. As she took her first sips of coffee, her tremors dramatically started to flare up. Her hands shook uncontrollably making her spill the coffee on herself. Mark rushed to her aid, only to find burns; it was shocking to see how difficult daily activities could become with hand tremors.

Mark decided to consult his aunt, a doctor who treats essential tremor, to discuss treatments and solutions. The only viable solutions at the time were medication, invasive surgery, and Botox injections. His structural engineering background began to kick in and he started brainstorming an alternative solution.

After countless nights of research and lengthy discussions with his aunt, Mark arrived at the ideation of the Steadi-One, the world’s first battery-free glove designed for hand tremors. A team was formed with his co-founder, Emile Maamary, whose family also suffered from tremors.

The team attended several support groups across Ontario and surveyed a lengthy list of stakeholders, including over 1,200 tremor sufferers, with high hopes of improving the lives of anyone with hand tremors and developing a worthy solution. Steadiwear’s first attempt of “raising the curtain on essential tremor” lead to starting a blog to address daily living with hand tremors. The recent launch of an online community support group on Facebook aims to build a stronger relationship with end users.

SteadiOne glove photo
Steadi-One

After significant testing, completing the regulatory requirements and multiple design iterations, the Steadiwear team launched pre-orders for the Steadi-One shortly after securing a third-party clinical trial. The Steadi-One is now available for purchase. In recognition of March National Essential Tremor Awareness Month, it is being offered at a discount price. The end goal is to help people with ET live better lives.

Learn more at the Steadiwear website or email info@steadiwear.com.

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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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