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International Essential Tremor Foundation

Rating: 4.84 stars   38 reviews 1,481

Nonprofit Issues:

Health

Address:

11111 W 95th St Ste 260 Overland Park KS 66214 USA

Mission:

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

2014 Top-Rated Nonprofit
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More Info

888-387-3667
http://www.essentialtremor.org

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Reviews for International Essential Tremor Foundation

Rating: 5 stars  

I've had Essential Tremors for over 40yrs !! I thought I was the only one out their with it until IETF came along ! I had a lot of my dreams shot to hell ( like becoming a police officer when I got out of the Marines ) because of this. Not Abel to write or type makes it hard to even keep a job at my age, but through IETF there are a lot of people to talk to when the going gets ruff and they have gotten the word out so a lot more people know !! Thank you IETF... You know I once had an application ripped up in front of me after they just said they want me to start the next day !! They said write down some info , after I started to write they saw my hands shaking they ripped it up and said don't call us.....

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Rating: 5 stars  

This is a wonderful origination. I follow them religiously via FB and website, They have very informative seminars. I watch them for new aids to purchase for ET awareness, They are a blessing for answers to questions,

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Rating: 5 stars  

1 person found this review helpful

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.

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Role: General Member of the Public
Rating: 5 stars  

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!!

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Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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.

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Rating: 5 stars  

1 person found this review helpful

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

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Rating: 5 stars  

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.

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Rating: 5 stars  

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.

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Rating: 5 stars  

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.

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