Tremor Gram Archive 2012
New Book on DBS
Deep Brain Stimulation: A New Life for People with Parkinson’s, Dystonia and Essential Tremor was written by Kelvin Chou, MD, Susan Grube, RN, MSN, and Parag Patil, MD, PhD. This is the first book to be written by a team of experts that clearly explains the pros and cons of this treatment option. If you are interested in learning more about this surgery, you can order this title through Amazon (which if you click the Amazon link on the bottom of the IETF homepage, essentialtremor.org, a portion of the proceeds will benefit the IETF), or you can order directly from the publisher who is offering a 20% discount and free shipping on orders of $29 or more. Use discount code SSDBS20.
IETF Seeks Scholarship Donations
On February 1, 2012 the IETF will announce the four recipients of the 2011 International Essential Tremor Foundation Scholarship Awards. Numerous applicants applied for the four $500 scholarships available to help further their education. We are delighted to assist these individuals in reaching their educational goals.
The IETF is looking for scholarship sponsors for 2012-13. The minimum donation to the fund is $500. There are naming and other recognition opportunities available and, of course, your donation is tax-deductible. (See your tax professional for details.) These scholarships are a powerful way to honor or memorialize a loved one. Please consider becoming a scholarship sponsor and help ET patients get the education they need to stay competitive in today’s difficult job market. Contact Catherine Rice, IETF Executive Director, by email or phone (888.387.3667) for further information.
Brain Change Study Looks for Participants
Beth Israel Deaconess Medical Center in Boston, MA is conducting a research study to look at brain changes in people with ET or PD. You may be eligible for this study if you have been diagnosed with ET or PD with hand tremor and/or other body tremor, are 21-80 years old, are not pregnant and have no medical devices or metal in your body which is not MRI-compatible. For more information on this exciting new study and possible reimbursement, please contact BIDMC directly at 617.667.9890 or email@example.com.
New Product Aids Tremor Patients
Mitch Kaufman‘s father had essential tremor. He always had a hard time keeping the bar of soap from being inadvertently flung out of the shower or dropped in the tub while bathing. It was both difficult and dangerous for his dad to maneuver after the loose bar of slippery soap, so out of concern Mitch invented the Soap Safety Sack. Now this product is available to everyone and Mitch is willing to donate $1.50 of the $3.95 purchase price back to the Foundation. For more information on this clever product, visit the Soap Safety Sack website at http://soapsafetysack.com.
March is Essential Tremor Awareness Month
In late December 2010, the U.S. House of Representatives officially designated the month of March as National Essential Tremor Awareness Month. We invite you to get involved in helping us raise awareness in communities throughout the U.S. and abroad. With 10 million Americans alone affected by this life-altering condition and a general lack of public understanding, we need your help to spread the word.
Check our website to learn what you can do in your community to bring a greater understanding of ET. Remember, a single voice is seldom heard, but a thousand voices can shake the world!
Participating in Research
Choosing to participate in clinical research is an important decision, so you should understand the benefits and risks before agreeing to be part of any study. For example, participating in research often gives you access to an experimental treatment before it is widely available. However, because the treatment is new, the effects might not be well understood. Who is in charge of the study? What is the study trying to find out? What will be expected of you? It is important to get the answers to these and other questions to fully understand the study and how it could impact you. For more information, check out these resources:
Visit the IETF website for essential tremor studies looking for participants.
- Read IETF member publications for updates: The Scoop research newsletter and Tremor Talk, our member magazine.
- Contact the Center for Information and Study on Clinical Research Participation (CISCRP). CISCRP is an independent nonprofit that aims to educate and promote clinical research participation. Find out more by phone at 888-247-2773 or online at ciscrp.org.
- How is the safety of the participant protected? ClinicalTrials.gov answers this and other frequently asked questions about clinical research studies.
High School Kids Design Assistive Device for ET
Bishop Kelly High School’s Engineering Design team, based in Boise, Idaho, is developing two assistive tools that may one day assist people with essential tremor (ET). These tools are being developed by the team as they participate in the 2011-2012 Lemelson-MIT InvenTeam program. The student team received a major grant of nearly $10,000 to invent and refine these tools. This nine-month project culminates in the June 2012 debut of the finished prototype device at EurekaFest held at MIT in Boston. The IETF is honored to co-sponsor this dedicated group of kids and underwrite travel expenses for the team to make the Boston trip. Read more about these amazing young people.
Brain Biochemistry Study Finds No PD Link
Researcher Dr. Holly Shill, Director of the Christopher Center for Parkinson Research at Sun Health Research Institute, recently published the article “Brain Biochemistry in Autopsied Patients with Essential Tremor” in Movement Disorders. This study builds on previous research funded by the IETF.
“This latest study is the logical next step. First, we looked at pathology,” says Dr. Shill. “Then, we looked at biochemistry in this current publication as that may be a more sensitive measure. I think we have really ruled out a significant link between PD and ET. Also, this current study says that the adrenalin system does not seem to be primarily affected in ET. However, it does suggest a role of the GABA system that warrants more investigation.”
This study concludes that there is no link between essential tremor and the development of Parkinson’s disease. This is good news for those affected by ET.
Read the full report here.
National Essential Tremor Awareness Month: Arizona Gets On-board
On Thursday, March 15, 2012, State Representative Lela Alston read an official proclamation recognizing March as Essential Tremor Awareness Month in Arizona. This proclamation was the culmination of weeks of phone calls and emails by IETF member and Phoenix resident, Christine Wertheim.
“I felt that people don’t know about ET. I explain it to people, but feel people should know more about it and donate to research,” says Christine. Regarding the proclamation, she was “thrilled” for it to happen. “It took a while to get approval.”
National Essential Tremor Awareness Month isn’t over yet. Check out our list of ways to raise awareness, for ideas on things you can do bring a greater understanding of this life-altering condition to your community, not only in March but all year long. Read more about the Arizona Proclamation.
Free Essential Tremor Publications
The mission of the IETF is to offer hope to people diagnosed with essential tremor and their families by providing educational information, advocating for greater awareness, funding scientific research and sponsoring support groups around the globe. To this end, we now have a link to our new one-stop-shop for ET information. Visit the IETF website to download and print free information on essential tremor, treatment options, and how individuals can adapt to life with ET.
National Institutes of Health (NIH) Calls for Greater Funding for Brain Research
The NIH works to enhance health, lengthen life, and reduce the burdens of illness and disability in the United States. They provide leadership and direction to programs designed to improve the health of the Nation by conducting and supporting research. In order to ensure that the NIH continues to receive support, the community needs to make the case to Congress that increased funding for the NIH is necessary, even in the current budgetary environment.
Your advocacy efforts do make a difference – so please make sure to contact your Members of Congress in support of the NIH. To find the contact information for your Congressman/woman, please go to www.house.gov and enter your zip code. Please ask them to sign onto the Markey-Bilbray letter in support of the NIH. In addition, please forward this message to your friends and colleagues and ask them to also contact their Members of Congress. The more voices who speak up for research, the better!
Check here to see if your Member of Congress has already signed the letter. If they have already signed, please thank them. If they have not yet signed on, please ask them to do so.
An Amazing Journey—Running for Understanding
As March is ET Awareness Month, many people have been thinking about creative ways to raise awareness and understanding of essential tremor in their communities. However, there are not many of us who would wake up one day and decide that running a marathon is the way to do it. But that is exactly what Sean Clay did. Five years ago, Sean’s wife Naomi was diagnosed with ET. He decided to do something for her, something he had never done before, run.
Sean spent a long time getting in-shape and has tackled a few half marathons before deciding to face the challenge of a 26-mile full marathon. “The full marathon is definitely another animal that I’m nervous about. But if Naomi can find the strength to tackle each day no matter what, then I can do it. She motivates me,” says Sean.
Please show your support for Sean, Naomi and all those affected by ET. Sean is asking for just $1/ mile pledge and all the proceeds will go to the IETF’s research fund. Donate on Crowdrise (http://www.crowdrise.com/cureetf) and follow Sean’s training progress on his blog (http://etrunner.blogspot.com/).
University of Alabama at Birmingham (UAB) Introduces Statistical Mapping of the Brain Study
UAB investigators are obtaining and analyzing brain MRIs of healthy individuals and comparing them to individuals with Parkinson’s disease, essential tremor and other similar disorders to start to develop some common, disease-specific maps to help in diagnosis. This study involves a clinical evaluation and a brain MRI done in two office visits.
Visit the IETF’s Clinical/Ongoing Research Studies webpage to find out more about current research. Review eligibility requirements for this study, inclusion/exclusion criteria and primary contact information here.
2012 Shari Finsilver Spirit of Hope Award Winner
The International Essential Tremor Foundation is honored to present the 2012 Shari Finsilver Spirit of Hope Award to Dr. Paul Donohue in recognition of his ongoing effort to educate the public and raise awareness about essential tremor (ET). Dr. Donohue’s syndicated newspaper column To Your Health frequently addresses questions about ET from readers. His column reaches a nationwide audience where they learn about the condition and understand that they are not alone. Addressing ET openly gives people hope that they can be properly diagnosed, get treatment, learn more about the condition from the IETF, and find support from others with ET.
Each year, the prestigious Shari Finsilver Spirit of Hope Award is presented to a person that embodies Shari’s spirit and commitment to combating ET, supporting the IETF, and spreading hope to those affected by ET.
Free ET Publications
For years the IETF has provided quality information to essential tremor patients by sending it through the postal mail. And although we won’t stop mailing information out to those without access to the internet, our internet-savvy members now have a wealth of material all at their fingertips; your one-stop-shop for essential tremor education. Visit our publications page today and download what you need.
Serving those affected by ET is what we do and we hope you glean both insight and hope from these free publications.
Kansas Representative Speaks about ET in Congressional Record
As we finished out a great National ET Awareness Month, the IETF’s own Congressional Representative, Kevin Yoder (KS), took the Congressional floor and spoke about the need for more awareness of essential tremor. “Unfortunately, there is no medical test to easily diagnose this condition,” explained Yoder, “and it is often confused with Parkinson’s disease and dystonia. In addition, due to stereotypes, embarrassment and a general lack of awareness, many people with ET never seek medical care or treatment. This can lead to more medical issues such as depression or isolation.”
The IETF is most appreciative of the Representative’s kind remarks concerning the plight of those affected and the quality of support the Foundation provides them. Read Rep. Yoder’s full remarks here.
It’s Almost Tulip Time!
Each year the IETF enlists those affected by essential tremor to help financially support scientific research. Tulips for Tremor®, the IETF’s research fundraiser, is coming again this July. Finding the cause of ET is the key to finding better treatments and a cure.
For years the Foundation has pleaded with researchers to look into various aspects of ET, to help unravel its mysteries. This year, with 15 grant proposals submitted, the scientific community has answered our call in a big way. Now is the time for the ET community to come forward in a big way and support this critical research.
The IETF has raised the stakes dramatically. We have set a ambitious $250,000 fundraising goal, specifically to fund essential tremor research projects. We want all of the viable projects submitted to the IETF to be fully funded. If we are forced to turn away potential researchers, they will likey move on to other areas of research.
The scientists have stepped up their game, and it’s time we did the same. Tulips for Tremor® is coming. Are you ready?
You don’t have to wait until July! Donate today! Call us toll free or go online to donate to Tulips for Tremor and receive a free Tulip for Tremor pin with your $25 gift! (While supplies last.)
By: Jacob Ernst, 10 years old, submitted by Jacob’s mom via Facebook
They shake fast and out of control!
Tremble, Tremble, Tremble
Rapidly and untamable!They have my power,
And I cannot contain their power!
They shake as powerful as an earthquake,
Tremble, Tremble, Tremble!What is it,
This terrible shaking thing?!
It is me, my hands,
Saying, “Tremble, Tremble, Tremble!”
Jacob is a typical 10 year old boy, except for the fact he has essential tremor. Jacob’s parents have known about his ET since he was 5. His mother, Nicole, explains that “he copes with it amazingly well, as seen by the poem.” Jacob wrote this poem for a school project and agreed to share it with all of you. He attends a local school for the creative and performing arts (SCAPA) and is obviously a very talented young man.
Just the other day Jacob was auditioning for Seussical the Musical when the voice trainer asked him if he was nervous. “I see you shaking,” he said. Jacob responded with a smile, “No, I just shake all of the time!”
Remember that the shaking is not who you are, it’s just something you do.
What is Focused Ultrasound? A question from our members
Numerous IETF members have contacted us with questions regarding focused ultrasound. Focused ultrasound is a breakthrough technology that is being studied as a possible future surgical option for essential tremor and other conditions. It is, basically, a combination of high intensity focused ultrasound and magnetic resonance imaging (MRI) technologies.
Focused ultrasound concentrates up to 1,000 intersecting beams of ultrasound energy with extreme precision on a target deep in the body; much like a magnifying glass can focus multiple beams of light on a single point. The individual beams of focused ultrasound pass right through tissue and have no effect. But when the beams converge on the target they have an effect, just as the converging beams of light will burn a hole in a leaf. The idea is to pinpoint the area of the brain that causes tremor, direct a focused beam of energy safely through the patient’s scalp, skull, and brain to precisely destroy a single area, without damaging any nearby tissue.
The IETF will continue to provide updates on this study and several others, as the research continues. For more information on ongoing research studies, please visit our website.
Learning about Essential Tremor
The IETF will host a whopping 26 free essential tremor seminars in 2012! Essential tremor patients, family members, caregivers, and health care providers are all invited to attend. Attendees will learn from local physicians about the diagnosis process for essential tremor, commonly prescribed medications, surgical options, current scientific research and more. Attendees will also be provided with a free essential tremor information packet to take home and share with friends, family and their own health care providers. Refreshments will be served and parking is usually free.
More information, including locations, driving directions and registration, is available by phone (toll free) at 888.387.3667 or at www.essentialtremor.org/seminars.
Technology Improves the Medical Alert Bracelet
The CARE Medical History Bracelet is a flash drive device that is worn like any other medical alert bracelet. However, this device allows you to create your own personal health record, which can then be printed or viewed by your healthcare provider or emergency personnel, on any computer. This record can contain your vital information such as blood type, allergies, current medications and emergency contact information. It’s simple to use and edit should your information need to be changed or updated.
To learn more, please visit www.medicalhistorybracelet.com or call (210)681-3840. Enter or mention the code “IETF” and receive $2.00 off the CARE Medical History Bracelet with Premium Software (retail price, $29.99)! Plus, a $5.00 donation will be made to the IETF for each Premium Bracelet purchase. For any other devices ordered from CARE Medical History Bracelet website, a $3.00 donation will be made to the IETF. All proceeds will fund ET research.
Scholarship Winner and Doctor in the Making
Sydney Strahm was diagnosed with essential tremor just four years ago, as a high school freshman. A resilient character, strong sense of self-worth and willingness to accept her condition has enabled her to develop a deeper understanding of those facing health challenges and a profound compassion for others. That’s why she intends on studying medicine this fall at Texas State University.
Sydney is one of five exceptional students affected by essential tremor who have recently been awarded an educational scholarship from the IETF. These scholarships allow them to follow their dreams of higher education regardless of their physical or financial limitations. “This little ‘quirk’ that I have will never be something that holds me back from anything I want to do in life,” explained Sydney. “I hope it continues to make me stop and have compassion for those that are not as lucky as I am.” With a spirit like that, we’re sure Sydney will go far.
Congratulations to all of our scholarship winners. Read their stories here. If you or a loved one is interested in more information about the IETF’s Scholarship program, read our scholarship criteria and apply online. We also accept donations to the scholarship fund and have naming opportunities available. Get all the information here.
IETF Awards Three Research Grants
The IETF will fund three essential tremor research grants in 2012 totaling $75,000. For more details on the grants, please read our national press release.
Usually, we are only able to fund two grants each year. However, because of your generous contributions to research this year, we are able to fund three cutting-edge projects! Thank you for your thoughtful donations.
Please consider making a research donation. Only through research we can discover the cause of essential tremor and develop truly effective treatment options for you. Be a part of tomorrow’s solutions, tomorrow’s cure … today!
Coping with Essential Tremor
We all handle the stress of everyday life differently. We all have our own story and own challenges. But those affected by essential tremor truly feel stress through their tremor. Here are some helpful and relaxing tips from our Facebook Fans on how they cope with stress.
Rebekah: Remember to breathe. When I am having a bad tremor day, I have to stop what I am doing, close my eyes, and take a deep breath. It helps me to focus. Being super woman is not an option in my life anymore. One thing, one day at a time.
Anya: After years of doing everything I could to hide my shaking head and hands and doing everything I could to avoid situations that made my ET worse – I have finally decided to just accept ET. In fact, I would go so far as saying – I EMBRACE IT! (Well, if you can’t beat it …) I now PROUDLY tell people I have ET. Strangely enough, just telling people I have ET makes me more relaxed and my tremor is not so visible. And even more strangely, I find myself trying to shake so people will believe me! LOL!!
Ralf: Take a chair and sit. Close your eyes, try to relax [each muscle group] beginning with your neck, then your shoulders, your arms, your body and finally your legs. Try to feel how your muscles relax more and more until your shoulders and your head starts sinking and you feel yourself totally relaxed. Stay in this position for a while. Stand up slowly, smile and open your eyes again. Feel good and don’t think about your ET. Talk to other people and tell them what ET is. There are millions of us, all over the world!
Share your tips and tricks with our “virtual” support group on Facebook. With nearly 3,000 members, you are definitely not alone!
It’s Tulip Time!
Tulips for Tremor Kicks off in July
A quarter of a million dollars. That’s what’s needed for essential tremor research. And that’s our commitment. This year’s Tulips for Tremor fundraiser is poised to be our greatest push for research funding ever. Researchers lack funding to continue their research to find the cause of ET and to find the best options for treatment. Without funds, their ideas will go untested.
Tomorrow’s understanding of ET, tomorrow’s new treatment, tomorrow’s cure relies on scientific advances. You can move it forward. You can act today for a better tomorrow. Please donate now and support ET research.Follow our progress toward our $250,000 fundraising goal with our interactive Tulips for Tremor map! Watch as the map bursts with colorful tulips, representing every Tulips for Tremor donation we receive. In addition, the IETF is offering lovely tulip lapel pins to help show your support and spread the message of hope. We will send you a pin with your donation of $25 or more (while supplies last).
It’s Tulip time! Together, we CAN find the cause of essential tremor! Finding the cause WILL lead to better treatments and a cure. Please, support this critical research. Please, donate now.
Putting the “Fun” in Fine Motor Function
In small children, the development of fine motor skills (the skills used when you move your hand to do an activity) are critical to accomplish many daily tasks and are usually well established by age 6. However, these skills can be hard to master for children with essential tremor. But, where there’s a will there’s a way, and we have found a great website that really does make practicing these skills fun! With games and activities like “Tying Ribbon to Make a Spring Tree”, “Balloon Volleyball“, and “Pool Noodle Javelin Throw” your child will have tons of fun as s(he) practices coordination and strengthens the small muscles in the hand.
Designed by Tonya Cooley, a Pediatric Occupational Therapist, the Therapy Fun Zone website has supply lists (which are usually short AND inexpensive) and instructions for each project. And who knows, with all that fun, you might want to join in too!
Long Island Steps Up
The IETF would like to offer a very special thank you to our Long Island, NY Support Group. After reading our May 2012 Tremor Gram article on the Tulips for Tremor fundraiser for research, the Support Group Leader, Harvey Glasser, felt compelled to ask his newly formed support group for assistance. “I simply told them that we all give to the cancer foundations, heart and lung associations and even Boy or Girl Scout groups,” explained Harvey, “but maybe we now should focus our efforts on supporting our own cause.” He continued, “I think what hit me the most about the articles in Tremor Gram was the fact that our Foundation (IETF) is doing such a remarkable job, considering the lack of funding and the limited number of people we have working with us. There is no “I” in “Team” and if we are ever going to see new medicines, more research and possibly someday even a cure, we all have to support our Foundation.”
Thanks to Harvey and the generosity of his group for their contributions and dedication to ET research. We truly appreciate all you do.
Essential Tremor in the News
Looking for recent articles about essential tremor? Believe it or not, they are out there. And the IETF has gathered them all in one easy location for your reading pleasure. If you want to find the latest ET news, check our In the News page to see what’s happening in the U.S. and around the world.
- Updated guidelines for treating essential tremor. Read this article.
- Seminar to shed light on essential tremor, often mistaken for Parkinson’s disease. Read this article.
Shaky Paws Grampa, Helping Children Understand ET
Carson and his Shaky Paws Grampa, the first book in the Shaky Paws Grampa series, is a story about the relationship and love between a grandfather who has Parkinson’s disease and essential tremor, and his seven-year-old grandson. The story is designed to help parents and grandparents comfortably talk about the initial symptoms of ET and PD and address common questions and concerns children may express.
A portion of the proceeds from sales of this book will go to the IETF. To order hardback or electronic versions, visit the innovo Publishing website.
Tulips for Tremor – The World in Bloom
Your donations have gotten us closer to our $250,000 research fundraising goal! Read more.
IETF Scholarship Deadline Extended
Are you or your children attending college this spring? Review our requirements, criteria and documentation.Learn more about how to apply.
Researchers Find Genetic Link
Researchers may have linked some cases of ET to a specific genetic problem. Find out what other experts think about this research in our next issue of Discover (the IETF’s research newsletter – coming January 2013). Read the press release.
High Schoolers with a Mind for Science
Your donations sent the Bishop Kelly High School InvenTeam to the EurekaFest at MIT, to showcase their assistive technology project. See how they did. Read about these amazing kids.
ET Study Looking for Participants
There is a NIH‐sponsored study to understand both the causes of ET and how various treatments work. Find out how to get involved on our website.
If You Like the Magazine, You’ll Love the Blog
Introducing a new way to stay connected with the IETF and the ET community. Visit our new blog, TremorTalk.org.
UAB Research May Have Solved a Mystery
Neurologist Dr. Harrison Walker says his team may have found the possible answer to how deep brain stimulation (DBS) works. Read this and other ET articles on our “Essential Tremor in the News” webpage.
The Making of an IETF Video
Coming soon! As part of our efforts to promote awareness, the IETF is producing a new essential tremor educational video. Watch “The Making of an IETF Video” for a preview of what’s to come!
Register for Dr. Dalvi Webcast
Thanks to a grant from Medtronic Foundation, we can now bring our live ET educational seminar right to your computer. The IETF has produced an educational webcast on essential tremor — covering the diagnosis process, treatment options and current research. Find out more on our website and register today!
Shop and Give
With the holiday season fast approaching, online shoppers have some options to buy and give at the same time. Just use this link for Amazon and shop as usual. A portion of your purchase price will automatically be donated to the IETF. Happy shopping!
Focused Ultrasound Study Results
The results are in for the first phase of the Focused Ultrasound Study at the University of Virginia. Read the results and find out what’s next for this study. Read more.
New Entry on TremorTalk.org
We encourage you to visit the IETF’s new blog, TremorTalk.org! Today’s post is all about accessibility and smart phones. Sign up for our RSS feed and never miss a post again.