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International Essential Tremor Foundation

Rating: 4.86 stars   44 reviews 1,736

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   Featured Review

2 people found this review helpful

I was diagnosed with essential tremor at 16 years of age. Other than my mother, I thought I was the only person alive with this condition. It was confusing, embarrassing and frustrating. Since joining IETF, I have learned so much about ET. The International Essential Tremor Foundation supports members with ET but also sponsors scientific research that is bringing about changes for those suffering from this condition. The foundation staff is amazing, dedicated and forward thinking.

 
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Rating: 5 stars  

1 person found this review helpful

Where would I be without the IETF? Very lost and very confused and fully without support.... ET is a life altering neurological condition that affects our lives in so many ways and yet has not really been studied..doctors don't know much about it and aren't much help..it takes a movement disorder neurologist to really dx it really. So, many people don't know what they have and go through life suffering and isolated. The IETF is working to change that for us through research and support. They need funding to continue their great work. We need them!

 
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Rating: 5 stars  

2 people found this review helpful

The IETF is the first and last resort of anyone affected by ET or with a friend or relative who is affected. It is the best source of up-to-date info about all aspects of ET - symptoms, treatment, physicians, research, support groups, etc. The IETF is my plug-in to a huge network of people sharing my concerns about this widespread but little publicized condition.

 
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Rating: 5 stars  

2 people found this review helpful

I have supported them for many years. Their information is essential for understanding this condition. Without them I probably wouldn't have known about DBS surgery. I am now tremor free but will continue to support them. They help so many people.

 
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Rating: 5 stars  

3 people found this review helpful

IETF really working for the Essential Tremor worldwide whether it be Awareness,Supporting People who have ET ,finding a cause for ET.
They are working for ET with full energy and Enthusiasm .Its like family to me to whom I can share and can get Information.

 
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Role: General Member of the Public
Rating: 5 stars  

2 people found this review helpful

A very dedicated organization. Up to date information, very knowledgeable.

 
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Rating: 5 stars  

1 person found this review helpful

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  

1 person found this review helpful

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  

2 people 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  

1 person found this review helpful

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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