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June 2011
Dear Friends of the IETF,
Happy summer from the IETF! We have decided to try something a little different this month with our Tremor Gram. After re-reading our past issues, we realized we had stopped talking to you, our supporters, a while ago and started talking at you. That’s no way to treat a friend. So, this time we are going to mix things up a bit and see if we can’t get you up-to-speed and in-the-loop without boring you to death.
We hope you enjoy the new flavor. If you have any comments about the content or suggestions for topics, just drop us a line.
Enjoy!
Find Support on Facebook
Not every community has an active essential tremor support group. And not every person has a lifestyle that lends itself to volunteering to start a group. So what do you do when the nearest group is 200 miles away? If you have an internet connection and a Facebook account, you have access to a “virtual” support group that is (as of today) 1,434 members strong.
When asked why our “fans” keep coming back to our page, I think Rebecca Thomas put it best. “People that don't have ET don't understand what it’s like to have this disease. Until I found this [Facebook page] I had no one to talk to or ask questions as I don't know anyone else that has ET. I am all about educating myself to as much information as I can get and I think I have found the place and the people to help me here.” Fan us and lets start shaking things up!
New Congressional Neuroscience Caucus is Open for Membership
We are delighted to see a Caucus that seeks to raise awareness about the millions affected by neurological disorders and mental illness starting up in Congress. After years of work and speaking out on your behalf, finally it seems that someone in Washington is listening. If our Leaders don’t know about conditions like essential tremor, how can they be expected to support pro-neurological causes and legislation? Take a moment and use this link to urge your Legislator to become a member of this new Caucus (link kindly provided by the American Brain Coalition.) Remember, a single voice is seldom heard, but a thousand voices shake the world!
Read more about our efforts in Washington DC.
College Scholarships Now Available
We are proud to announce that we have four $500 scholarships available for post-high school students. The IETF/Robbie Gould Scholarship is for anyone of any age; all you need is have ET and be going to a licensed, accredited institution of higher learning. Let us help you move forward.
Master's Thesis Looks at Early Onset Impact
 Lauren Nicole Ahles, grad student at Brandeis University, has ET. She wondered how having ET early in life affects day-to-day living; everything from personal relationships to family planning. She interviewed eight subjects (including IETF Ambassador, Preston Boggess) and developed her Master’s thesis based on these interviews. It comes down to making medical providers more aware of the many ways ET can affect a patient’s life. It’s not all about shaky hands.
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