Recently we got this great news from one of our most supportive voices and ardent supporter – Joy Schaaf. We congratulate Joy on her great video and all the support she has provided in the last two years. For more about Joy visit, http://www.essentialtremor.org/read.asp?docid=907 and her story appears 3/4 the way down the page.
Dear IETF and Friends,
Joy Schaaf is at it again. Spreading awareness through a skit. Ohio has a 4-H Health and Safety Skit Competition. Joy and her sister Hope wrote a skit about her essential tremors. They won at county level and then again at regional level. Tomorrow they will be attending the Ohio State Fair for the final round in the competition. Last year it was taped and put on the internet. We are hoping it will be taped again. If she wins and if it is taped, we will let you know where you can watch it. Information from your website was very helpful in the writing of this skit and all information obtained was sited correctly.
Come spend some time with me and Dr. Pratap Chand Saturday morning, August 17, 2013 from 9:30 – 11:30 am at the St Louis Airport Marriott learning more about essential tremor. Go to www.essentialtremor.org/seminars to register. I look forward to meeting you and together learning about the medications, surgical options and research that is being done in ET.
Come and wear your button and take a picture with me so we can show people where our buttons have been and also to increase awareness around the St Louis area!
In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.
Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at firstname.lastname@example.org.
We will be facilitating another free ET education event/seminar on August 10 in Milwaukee. Come join us as we get together with the ET community to learn more about the diagnosis process and treatments available from Drs. Karen Blindauer and Peter Pahapill of the Medical College of Wisconsin. Follow this link www.essentialtremor.org/seminars to register online or call toll-free at 888-387-3667. We look forward to seeing you there!
Follow the progress and learn more about Brain Research through Advancing Innovative Neurotechnologies – the BRAIN Initiative – at www.nih.gov/science/brain/index.htm. This is an extremely important project because it accelerates our understanding of how the brain works. This in turn will help advance research that develops new interventions for conditions and diseases – like ET! The new tools and technologies that will be developed will lift all research to new levels and provide breakthroughs in the future that enable the development of better treatments and cures to be found.
Recently, during the annual meeting of the American Association of Neurological Surgeons, IETF Medical Advisory Board Member Dr. W. Jeffrey Elias presented the results of the first phaseof the University of Virginia’s focused ultrasound study. Elias reported that after one year, study participants showed improvements in daily disabilities and quality of life. Publication of the actual study data is pending.
How does ET make you feel? A new video centers on the ways ET can make life challenging. Featuring six individuals who share personal stories about their life with ET, Essential Tremor is more than a tremor aims to broaden awareness and understanding about ET among healthcare providers and the general public.
We had so much fun at the Omaha Education Seminar and we all learned a lot from Drs. Torres-Russotto and Follett. We want to give both of them a huge thank you for sharing their time and expertise about ET. To learn more about the Movement Disorders Center at the University of Nebraska in Omaha go to http://www.unmc.edu/neurologicalsciences/movement_disorders.htm.
Please join us in Irvine, CA for the upcoming event on Saturday, April 27. You can learn more at http://www.essentialtremor.org/Seminars. I would love to meet and share in the experience with you.
When medical or surgical therapy has not controlled all of the symptoms of essential tremor, some people have found that focused breathing and meditation are effective practices for calming the mind and body. In the cover story of our most recent Tremor Talk magazine, Dr. Monique Giroux writes that employing such mindfulness strategies can reduce the negative impact of stress and sharpen the mind’s potential for personal healing.
“It is a way to stay in the present moment, engaging in life and living life as fully as you can,” she says. “Mindfulness can be a helpful tool to enhance the effect of medicine and surgery on tremor control. The next time your tremor feels ‘out of control,’ take a moment to reflect, and know that you have control in how you respond.”
Is mindfulness part of your regimen to regulate ET’s impact on your life? What has your personal experience been? Please share: inquiring minds want to know!
Essential tremor affects people of all ages. For children, tweens, and teenagers, the challenges of living with ET can include difficulty performing school activities such as writing, typing, or drawing. Meal times at school may be stressful, and because they don’t understand ET, peers may make hurtful comments—intentionally or not.
If you are a young person, or the parent of a young person with ET, we’d love to hear from you here. Consider this a place to begin connecting with others like you. Ultimately, such connections should lead to greater understanding, a wider support network, and opportunities to share advice with other young people and their parents.
To get the ball rolling, we’ll share the insight of IETF Facebook page friend Kathryn Suzanne, who says her young child with ET has enjoyed using rock crayons because they’re easier to grip and control than traditional stick crayons.