Joy Schaaf in the News!

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.
Sincerely,
Teresa Schaaf

They didn’t win, but they did an excellent job! You can watch the video online at the following link: http://www.ohiochannel.org/medialibrary/Media.aspx?fileId=139803. The skit “Essential Tremors” is halfway through all the videos at 47:45 min. Check it out!
Teresa

Meet Me in St Louis!

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!

Milwaukee ET Event

We had a great time in Milwaukee with 80 people attending the extremely educational ET seminar. The presentations were very well done and provided a lot of information. Dr. Pahapill talked about his 20 year experience in the treatment of ET with deep brain stimulation and Dr. Blindauer reviewed the many medications that are often used and why some may not be successful in the treatment of ET.

For more information about the Froedtert and Medical College of Wisconsin Neurosciences Center go to: http://www.froedtert.com/SpecialtyAreas/ParkinsonsMovementDisorders/

 

 

 

 

July DC Report

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 info@essentialtremor.org.

 

Milwaukee Wisconsin here we come!

Hello Milwaukee and surrounding areas!

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!

Where Has My Button Been?

Omaha 2 WHMBBHello Everyone!

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.Omaha Event WHMBB

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.

IETF Board Member Shares Expertise

IETF Medical Advisory Board Member, Theresa Zesiewicz, MD from Tampa, FL will be part of a panel sharing her expertise in the treatment of movement disorders at the International Association of Parkinsonism and Related Disorders (IAPRD) in Marrakech, Morocco May 24-25, 2013.

Abderrahmane Chahidi, DCFP, MRrici, Local Coordinator of the Congress and General Secretary of the MSAE  announced the First “Teaching Course in Movement Disorders” supported by the IAPRD.

The teaching program will consist of a panel of renowned international and national faculty in the treatment of movement disorders. International faculty includes Pr. Erik Ch Wolters (Amsterdam/ Netherlands), Pr. Daniel Truong (Fountain Valley, CA / USA), Pr. Theresa A. Zesiewicz (Tampa, FL / USA), Pr. Alberto Albanese (Milano/ Italy), and Pr. Tarek Yousry (London / UK ).

The program is designed to benefit young trainees in Neurology who aspire to specialize in Movement Disorders and update the practicing Neurologists, also neurosurgeons, radiologists and neuroscientists interested in movement disorders.

Where has my button been? Join in the fun!

ZoomButtonwithTitleThumbWe’re always looking for fresh ways to bring essential tremor into greater public consciousness. In this high-tech age, we have all sorts of digital solutions, but for our latest effort, we’ve gone decidedly old-school: a simple one-inch button that you pin on your lapel (or wherever you like!). The button features the same Archimedes spiral that is used by movement disorders neurologists to help diagnose essential tremor and that is also seen in the IETF logo.

Based on anecdotal evidence from those of us at the IETF headquarters who’ve worn them out and about, the handsome, bright-green spiral has proven to be a fine conversation starter. During March, for National Essential Tremor Awareness Month, we distributed more than 2,500 of these must-have accessories. They are free and we will be using them all year long to raise awareness about ET.

Join in the fun on our Facebook page at https://www.facebook.com/InternationalEssentialTremorFoundation where people will be sporting their spiral buttons and engaging in Where has my button been? activities. Several of my ET friends in Houston and I posted the first picture on Facebook to commemorate my button’s inaugural visit to Houston for the ET Education Seminar.

You may order your button through our webstore at http://www.essentialtremor.org/SiteResources/Modules/webstore/scripts/default.asp or by calling our toll-free number 888.387.3667. Order a few extra to share with friends, and expand the circle of button-wearers! Let’s see how many different and exotic places these stylish buttons (with their owners!) travel. So please, tell us–and show us–where has your button been?

If asked about the button, you can sound very worldly and educated:

▪ Tell them that the spiral is named after the Greek mathematician Archimedes (287-212 BC);

▪ Tell them that asking a patient to draw an Archimedes spiral is one of the indicators physicians have for diagnosing essential tremor;

▪ Tell them that for millions of people worldwide, the spiral represents hope for a better future;

▪ Ask them to join you in supporting efforts to raise awareness and funds to find better treatments and a cure.

 

 

A Day of Giving

Giving Tuesday

?Deeds of giving are the very foundations of the world.? -Jewish saying derived from the Mishna, Pirkei Avot 1:2

In the U.S. we have our traditions. We celebrate Thanksgiving on the fourth Thursday each year by spending time to feast with friends and family and give thanks for all of our blessings. On Friday, after we recover from our carb-coma, it is estimated that 247 million thankful Americans hit their favorite stores and shopping malls, spending around $59.1 billion (that’s right ? with a ?b?). Then Cyber Monday hits and as people head back to their offices, they load up on online deals to the sum of another $730 million.

This year there was a new day holiday marketers wanted to see join the season’s frenzy–a new national movement to dedicate one day strictly to giving back. GivingTuesday? is a campaign to add a new date to the national calendar; a date selected to show support for those non-profit organizations who strive each and every day of the year to fulfill their mission and make the world a better place.

This year was the first ever GivingTuesday?, and the IETF was happy to take part. With just an email and a few posts on Facebook, our generous friends donated $2,200 to the IETF mission! Not only that, those who were unable to give financially were encouraged to give back to their community by distributing essential tremor information to hospitals, clinics, doctor’s offices, schools, civic and senior centers, etc. to help raise awareness.

We thought if we raised $50 we would consider it a successful day. But after our first post, donations of every size and from all over the world began coming in. We quickly raised our goal to $500, then $1,000. But we never dreamed we would raise $2,000 in one day. We have an amazing group of supporters who came forward to give back. We are both impressed and humbled by their generosity.

Thank you to everyone who made this very first GivingTuesday? a great success! If you missed it, you can still donate. Here’s a link: www.essentialtremor.org/givingtuesday. Show your support for your foundation. Make us raise the bar even higher! Any day can be a giving day. Can we hit $3,000? I guess we’ll find out ?