International Essential Tremor Foundation
Rating: 4.83 stars 36 reviews
Location: 11111 W 95th St Ste 260 Overland Park KS 66214 USA
The mission of the International Essential Tremor Foundation (IETF) is to provide global educational information, services and support to children and adults challenged by essential tremor (ET), to their families and health care providers, as well as to promote and fund ET research.
Results: We spend a great deal of time educating those with essential tremor about ET, the public and healthcare providers. This entails traveling to exhibit at national conferences, promoting and facilitating community education seminars, creating educational materials and tools such as webinars, webcasts and videos to provide support and distribute materials to the multiple support groups across the country.
Target demographics: All age groups
Direct beneficiaries per year: People diagnosed with essential tremor and their families.
Geographic areas served: International
Programs: Develops and Maintains Support Groups, facilitiates free community education seminars, promotes National ET Awareness Month, Develops educational Webinars, Webcasts, and Videos, Maintains an active Database that lists physicians whose expertise is movement disorders, and exhibits literature at national health conferences
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I became aware I had inherited my mom and maternal grandmother's tremor when I was 20 years of age. I am now 61 years of age. IETF has helped me to learn about the current research and what is happening in the area of treatment. Also I find hope and connection from this organization.
A coworker actually introduced me to the IETF, and it has opened up so many new friendships for me. I have had tremors since I was a child, and I always felt so alone, felt I was a young person trapped in an old persons body. Now thanks to "Tremor Talk", IETF's magazine, and the Facebook page, "Understanding Essential Tremors" I can talk with people who understand, who have been where I am, and it is truly a wonderful thing! Thank you IETF!!
I meet with others with Essential Tremor monthly and have lunch. We often have a speaker and chat about new findings and aids to help minimize our shaking. The Foundation is the organizer for these meet-ups, and it is one way they've helped me.
Before I was diagnosed with Essential Tremor, I'd only heard about it from articles about Katherine Hepburn many years ago. My diagnosis was a surprise to me, and when I talk to friends and family about it, no one seems to know anything about it either. Through the International Essential Tremor Foundation, I've found out that Essential Tremor is very common, but very little is known about it. To date, ET has attracted far less research funding than it seems like it should, since it affects so many people. The IETF has been very helpful in providing me with information about ET. I recently participated in a research study that I found out about after reading the IETF magazine. IETF is an invaluable resource, providing information to the many thousands of people who suffer from ET.
I was diagnosed 2 years ago with Essential Tremor and at the time I had no idea what that was. So after some time surfing the internet, I found the IETF website and became informed. I also contacted an Essential Tremor Support Group Leader who encouraged me to become a group leader for my area; the Palm Springs area. My group started with 2 and is now up to 14 since February 2014. The foundation is awesome and helps thousands of people! Their staff is always ready, willing, and able to assist whenever I need them. Thank you, Janine
The small but capable, hard-working and dedicated staff is responsive, supportive, knowledgeable and does great work for people with ET. Cathy Rice just staged a seminar for us in Albuquerque. It was well-organized and gave the audience the latest information on research and tools to help attendees cope with tremor. This is one of the few non-profits I trust with my donations, knowing the small amount I can give will be put to good use.
When first diagnosed with ET I felt alone and uninformed.
After some online research I found the IETF site to be very helpful and decided to join the organization. The current info. as well as the webinars they have offered have been MOST helpful as my neurologist and I work together to determine the best course of action for me. I have such difficulty writing, keyboarding, and eating, that support is very welcome, both physically and mentally.
The IETF is very up to date with news and research for Essential Tremors, which brings hope and an awareness that is much needed. I an very happy to say I know my donations are being put to good use because the IETF has helped fund vital research into this disease, furthering our journey towards a cure.
When I was first aware of my tremor 40 years ago, few people new anything about it including doctors. Thirty years later, when I was in need of more help, I was referred to Mayo clinic and was relieved to find neurologists who were very familiar with ET. Since then, the IETF has kept me abreast of research regarding new drugs and treatments, client studies, seminars, and real life experiences of other tremor sufferers. Jane
I am 67 years old. For many years, since I was in my twenties, I have had problems with my hands shaking lots. I sold tickets for an air line and always had people asking me why I was so nervous. It really make you feel depressed when you don't know what is wrong. My Father and Grandfather also shook. I just thought that it was something that I inherited and I did! Now my Brother, who is 54 and my Nephew, 32, also shake a lot. I even went to the Doctor to find out what it was. They didn't know. Finally, in the past about 15 years I was diagnosed with Essential Tremor. I went to one of the functions that Emory/IETF put on about 6 years ago, since then have been connected to their website. It is wonderful to know what is wrong with you. On the IETF website, I have found many things that help our entire family. Thanks to all involved, I know there are others out there that feel the same!