ET Will Not Prevent Me from Achieving My Goals

Each semester, the International Essential Tremor Foundation presents four college scholarships to students with essential tremor. The scholarships represent hope for the future, and provide support to these students during a pivotal time in their lives. As part of the scholarship application process, each applicant is asked to write an essay that answers the question, “How has essential tremor affected my life?” The following essay is from one of our spring 2018 scholarship recipients.

By Kelley Cordeiro
Doctoral Student at Molloy College
Rockville Centre, NY

How has essential tremor affected my life? I could answer this question by describing the challenges it creates trying to control my trembling hands with even the smallest tasks, like threading a needle, counting out change, applying makeup, typing, or measuring ingredients, just to name a few. I could talk about how much I notice my tremor at the end of a long day, when I try to unwind by reading a book or watching television, but I have to concentrate on trying to keep my head still. This becomes even more difficult when my head trembles on my pillow at night, making relaxation and sleep a conscious effort, and often an elusive goal.

I might answer that having ET has caused me to answer questions for my children about why I am shaking, why grandma shakes too, or the most difficult question, “will I shake like that when I grow up?”

There are so many possible ways to answer the question of how ET has affected my life. My favorite answer is that is has NOT affected my life. I am the mother of three wonderful children. I chose a mid-life career change to afford me the opportunity to be a stay-at-home mom, but also involved returning to school at an advanced age. I completed my master’s degree in a new field with a 4.0 GPA. I am now pursuing my doctorate degree in the field of education, with the goal of being an agent of change in diverse learning communities.

I take on extra teaching opportunities to help cover the costs of my tuition, which increases my stress level, which increases my tremor, but which is not an excuse I am willing to let stand in my way, or prevent me from achieving my goals.

Will my children develop a tremor as they grow up? What is the best way to answer this question for my children? Research indicates that there is a strong chance that they may develop this familial condition. So, when I respond to my children I want to give them an honest answer, supported by the evidence of my example: Yes, you may develop essential tremor, but it doesn’t have to affect your life!

I want to thank the IETF for the opportunity to be considered for a scholarship, which can help me achieve my educational goals. I would like to say that ET has not affected my life, but the IETF has!

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The deadline for fall 2018 scholarship applications is May 1, 2018. Application information is available on the IETF website. Interested in supporting students with ET during their educational journey? You can donate online.

 

High School Student Develops App to Detect Parkinson’s and ET

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High school student Erin Smith has developed an app that helps to diagnose Parkinson’s disease and possibly other neurological conditions through facial recognition. She serves as an example of how young people are stepping up to invest themselves in making a difference in the lives of others through their ingenuity and motivation. Here is her story.

By Erin Smith.
Senior at Shawnee Mission West High School
Overland Park, Kansas

About two years ago, I was watching a video by the Michael J. Fox Foundation when I noticed that whenever Michael J. Fox or another Parkinson’s disease patient would smile or laugh, it came off as emotionally distant. Further, as I talked to Parkinson’s caretakers and clinicians, they reported similar observations in their loved ones years before diagnosis. As I read medical studies, I found that the often overlooked sections of the brain that undergo the earliest changes in Parkinson’s patients are the same parts involved in the formation of facial expressions.

My mind instantly went back to a TV show I had watched as a child called Lie to Me,  where a deception expert would solve crimes by studying facial expressions to determine if people were lying. I wondered if facial expressions could have similar health care implications and provide external manifestations of neurological pathology. 

FacePrint App is Born
I then launched a study in partnership with the Michael J. Fox Foundation Trial Finder to expand my research on a national level. Using the data I collected, I developed FacePrint, a tool to diagnose and monitor Parkinson’s disease using the early stage facial muscle indicators that I identified. FacePrint provides an inexpensive, remote tool for early stage Parkinson’s disease, requiring only a computer and webcam. Further, FacePrint is compatible with facial recognition used by Snapchat and Facebook, creating a selfie that could save your life.

Differentiating Between Parkinson’s and ET
However, after developing FacePrint, I quickly began to notice distinct facial movement differences in patients with other neurological diseases. I started formulating the idea that facial behavioral biomarkers could non-invasively differentiate between Parkinson’s disease and Essential Tremor patients. My new mission has become to create a robust, differential diagnostic and monitoring tool for Parkinson’s disease and Essential Tremor patients. It is my hope that developing accurate diagnostic and monitoring systems for these two diseases will lead to improved, earlier treatment options and ultimately a cure.

Ridding the World of Neurological Disorders
Beyond my goals for my research from a medical perspective, I also hope to create a source of hope.

I firmly believe that change occurs on an individual level. It is one person doing one thing different one time. It is one person caring about one topic and doing everything that he or she can to make a difference in that area. It is one person taking one step forward one time.

I believe that the journey towards a cure for Essential Tremor and Parkinson’s disease will follow the same pattern. However, while change occurs on an individual basis, impact occurs when we all come together to leverage that change. My work is just one piece of the larger puzzle. We must all come together and put the pieces together. It will take everyone devoting their time, efforts, and stories to lead to a day when Parkinson’s disease and Essential Tremor are cured conditions. Although it is easy to become discouraged, my research has filled me with a deep sense of optimism for our future. There are researchers, patients, caretakers, clinicians, and everyday citizens around the world who are making remarkable progress and strides in this field. We are not marching alone. Rather, we are marching hand-in-hand, striving towards the day when our collective impact will create a world without neurological disorders.

YOU CAN PARTICIPATE IN ERIN’S STUDY

Erin is expanding her original research to include essential tremor and persons with no neurological disorders to determine if this test (her app) can easily differentiate between the two, possibly saving patients years of misdiagnosis. The study takes about 10-15 minutes and requires a computer with a webcam. It typically works best on Chrome, which can be easily downloaded online if not already installed (see link below). If you have ET or Parkinson’s Disease please take this test and please encourage your friends and family members without either disease to participate as well.

ET Has Affected 5 Generations in My Family

By Shari Finsilver,
VP of the IETF Board of Directors

Increasing awareness about essential tremor (ET) has been my passion for almost 20 years.  But, I must confess … I was not very open about my tremors prior to this. In fact, I did everything imaginable to hide them, even from my parents!

My courage came from all the members of my support group. It is often said that when we volunteer, we get much more back than we give. Well, that was so true in my case when I decided to start a support group in Michigan in 2000. I marveled at the candor, courage, and self-pride in many of those members and, eventually, decided to follow their lead to become more open about my own ET.

Joining the IETF Board
When I was invited to join the IETF Board of Directors in 2001, I found another platform that I could use to further raise awareness, while also getting involved in education programs, fundraising, and research. I am committed to expanding the work of the IETF, the most recognized organization helping ET patients and families.

ET began challenging my life at 11 years old. I’ve heard it said that those of us with ET are much more intelligent and creative. Well, I’m not sure I would go so far as to say that … but I did become very creative in developing ways to cope with these troubling tremors! When the IETF compiled a list of coping tips, I was able to share all of mine with all of you.

The Choice to Have DBS Surgery
After having lived with increasingly challenging ET for almost 40 years, I decided to have deep-brain stimulation (DBS) surgery in 1999. DBS changed my life.

ET has, so far as I know, affected five generations in my family. I will continue to do everything in my power to help those of us with ET get more effective medical treatments, increase awareness so the public doesn’t misjudge and label us, better educate the medical community, and fund research that will discover a cure.

Join Us to Help Raise ET Awareness
I hope I can count on each of you to do something that helps the ET community. So many great ideas are listed on the IETF website. If all of us raise our voices about ET, we can educate the world.

 

 

Being a Child with ET is Like Being a Tiny Sapling in a Windstorm

By Allison Dyke,
Student at Kuyper College

Allison Dyke

Having essential tremor is like being a tree with leaves shaking uncontrollably in the wind. Even though your roots are strong, you are unable to control the movement of your branches.
However, being a child with essential tremor is like being a tiny sapling stuck in a powerful windstorm. You are not fully developed and your roots have not been completely planted.

ET Diagnosis
Since the age of four, I have battled with essential tremor. My shaky hands and legs made tasks such as eating, tying shoes, and riding bikes difficult to complete. I was just learning how to do these activities, which can be challenging without having a movement disorder. While these tasks were strenuous, the hardest part about being a child with essential tremor was other children and adults jumped to conclusions without understanding what essential tremor is.

“She’s just stubborn,” was often coldly stated to my parents as an explanation of why I was failing at making a perfect bow with my shoelaces. If I wasn’t being “stubborn” I must be either nervous or cold. Fine motor skills were frustrating to master and I became withdrawn from participating in physical activities. It was hard to understand why I couldn’t do what other children my age could do. With supportive parents, I was encouraged to never give up. The saying at my house is, “Where there is a will, there is a way.”

Soon I found an activity where shaking didn’t matter, swimming. It helped rebuild the confidence that this disorder had taken away. I found ways around difficult tasks, such as using assistive devices to improve my penmanship or supporting my elbow when applying makeup. It was clear that the physical and emotional effects of essential tremor were not going to dictate my future.

Connecting with the IETF
Then at sixteen, I discovered the International Essential Tremor Foundation, and wish I would have found them sooner. Their website provided informational downloads that I gave to my teachers and school administrators, so they could better understand this disorder. I connected with other kids my age who were going through the same experiences. IETF encouraged me to reach out to my community by organizing awareness walks and starting a support group. And they provided me with a college scholarship. With their support, I have met wonderful people who understand what having tremors is all about and I know I am not alone.

Now I’m nineteen and people still ask if I’m cold or nervous. But, I’ve learned that sharing my experience and educating others about essential tremor gives me an opportunity to explain that this condition is not just for older adults, but impacts young people as well. An estimated 10 million people in the United States are affected by this condition, yet very few have heard of it or understand it’s impact. Through awareness, I’m no longer a tiny sapling; I am strong oak supported by a dense forest away from the wind.

Editor’s Note
Allison is one of thousands of children and young adults around the world who struggle to live normal lives with essential tremor. She is a former IETF Scholarship Recipient. The scholarship program is one of many support programs conducted by the IETF. Your donations help support these programs and people with essential tremor. Donate today. 

New Year, New Opportunities

Patrick McCartney
Executive Director

As we kick off 2018, we are excited about the New Year and the opportunities to promote our mission to provide hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.

The IETF is celebrating its 30th anniversary in 2018. We will kick off the celebration in March, which also happens to be National Essential Tremor Awareness month. There are a variety of ways for you to advocate for more ET awareness and education in your community. To learn more about how you can get involved here.

When we ask ET patients what they would like to see the IETF focus its efforts on, one subject comes up consistently: research to help find a dedicated treatment(s) for ET and, hopefully, someday a cure.

With the generous support of our donors,
we have been able to fund more than
$750,000 in ET research.

 

If you would like to learn more about the studies your donations have funded and the results they have achieved, you can find more information here.

Also, there are several clinical trials currently taking place that focus on ET-specific medications and wearable devices. If you are interested in participating in one of these trials check out the list of programs on the IETF website. You can also visit www.clinicaltrials.gov for easy access to free information on clinical studies for a wide range of conditions including ET.

Another great way to get involved is through a local support group. The IETF currently has more than 60 support groups around the world. We have a listing of all the supports groups on our website here. Or take part in our online support group through Facebook.

If you can’t find a support group in your area and Facebook isn’t your thing, we encourage you to consider starting a support group. We have all the tools to get you started and help you promote the meetings.

As always, we thank you for your support of the IETF and the ET community. The IETF has so many resources to share with patients, doctors, family members, and caregivers. We hope you will spread the word and help us continue to educate people on the most common movement disorder in the world.

 

 

Raising Awareness Year Round

General-Awareness-YR-Facebook-CoverNational Essential Tremor Awareness Month may be over, but efforts to raise awareness don’t have to end on March 31. What if we didn’t just commit ourselves to raising awareness one month out of the year? What if we made a conscious effort to connect throughout the year with our communities to raise awareness about ET? Every day is a great day to increase awareness in your community! ET Awareness can be described as anything you do to help people understand what ET is, why the International Essential Tremor Foundation exists and how we can connect with others to fund more research to find better treatment options and a cure. Our efforts combined throughout the year to raise awareness could help so many people with ET live better lives, find treatment options that work for them and provide support for one another.

Raising awareness throughout the year can be a small or big project, the important part is that we are all keeping ET in the forefront of conversations and increasing the number of connections to the IETF mission. Raising awareness can be as simple as committing your office to hosting a “Jeans Day” each Friday with proceeds benefiting the IETF or distributing IETF materials to your local neurologist or physician. The possibilities are endless. Below are easy examples of how you can continue to raise awareness in your community beyond the month of March.

  • Share our posts on Facebook, Twitter and Google + with friends.
  • Post ET facts and hand out free IETF awareness posters around school, local businesses and your office to educate others about ET.
  • Start a Support Group in your area.
  • Computer Screen Savers: Add the IETF logo to your screen saver and send it to your friends and everyone in your family! Or simply create a text screen saver on your own computer that others will see when you’re away from your desk.
  • Share your story and get an article in your local paper: Contact your local newspaper about media outreach opportunities. You can also include information about how people can contribute.
  • Meet the Press: Does your company distribute a newsletter? Does your company have intra-office email? Take advantage of these…it’s a perfect way to get the word out about ET.
  • Universities & Colleges: Contact your local schools and ask if you can put an advertisement in their school newsletter to create greater awareness. Some organizations may even invite you to make a short presentation.
  • Write to your local politicians: You supported them; don’t you think they should support you?

Have you had a successful awareness event? Connect with us to share your story. Your ideas could inspire others to get involved in creating more awareness for ET. ET awareness can happen 365 days a year. Start today!

Celebrate National ET Awareness Month This March

Awareness-Facebook-Cover-Photo-21Raising awareness for essential tremor is the first step to increasing knowledge. Together with more knowledge, we can accelerate scientific research, advance treatment options and address the challenges of everyone affected by this life-altering condition.

This March, share that it is National Essential Tremor Month (NETA). There are so many simple ways to get involved to promote ET awareness.

Your contribution, no matter how big or small, will help fund programs that support and promote essential tremor awareness worldwide. Awareness builds knowledge. And together, knowledge can bring us one step closer to greater understanding, better treatment options, and ultimately, finding a cure. Help us build momentum worldwide!

Make an Impact on #GivingTuesday

Web-Banner5When the fun and feasting of Thanksgiving is over, and two days of getting great shopping deals on Black Friday and Cyber Monday are behind you, there’s one more important day to remember, GivingTuesday. On December 2, we’re joining a national day of generosity, #GivingTuesday. It’s a day when you can make a big impact on essential tremor and on your friends, family and neighbors living with this life-altering condition.

With your help, we’ll raise funds to further research to find the cause of essential tremor that leads to treatments and a cure, increases awareness, and provides educational materials, tools, and support for healthcare providers, the public, and those affected by ET.

How can you be part of it? Here are a few simple ideas:

With your support, we can raise ET awareness for more support, better treatments, and ultimately, finding a cure.

“All hands on deck” for BRAIN Initiative

BRAIN-InitiativeDescribed as America’s next moonshot, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative is an NIH 12-year scientific plan focused on revolutionizing our understanding of the human brain. The IETF has joined major foundations, patient advocacy organizations, universities, and corporations, to align more than $240 million in research efforts to the initiative.

Since President Obama announced the Initiative in 2013, dozens of leading technology firms, academic institutions, scientists and other key contributors have made significant commitments to advancing brain research to better understand disorders such as Essential Tremor, Alzheimer’s and Parkinson’s diseases and more. Approximately $46 million in federal grants will support the research projects of over 100 investigators in 15 states and three countries. Stay up to date and spread the word on the BRAIN Initiative to uncover the mysteries of brain disorders.

Raise Awareness Through Great Nonprofits Top-Rated Awards

Great NonprofitsYou have an opportunity to help us make even more of a difference for raising ET awareness. GreatNonprofits – a review site like TripAdvisor – is honoring highly reviewed nonprofits with their 2014 Top-Rated List. The GreatNonprofits Top-Rated Awards program is a lot like a people’s choice awards where volunteers, donors and people served by the great work of each and every nonprofit can cast their vote in the form of a review to express their appreciation and potentially win nonprofits a spot on the List.

Winning nonprofits that get added to the GreatNonprofits 2014 Top-Rated List will get exposure from media and corporate foundations nationwide. Plus winners will be added to the GreatNonprofits #GivingTuesday and Holiday Giving Guide and included in City Pages and Releases for Top-Cities, gaining even greater awareness for essential tremor.

To qualify for the 2014 Top-Rated Awards, we need to have at least 10, new positive (4 or 5 star reviews) from different users until Oct. 31, 2014. Help us raise visibility for essential tremor by posting a review of your experience with the IETF. It’s easy and only takes 3 minutes!

Go here to get started.