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International Essential Tremor Foundation

Rating: 4.86 stars   58 reviews

Nonprofit Issues (NTEE):

Brain Disorders Research, Health, Neurology & Neuroscience

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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Reviews for International Essential Tremor Foundation

Rating: 5 stars   Featured Review

4 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  

Personally this page has been a great blessing because it helped me to know a little more about my illness and to know that there are other people who are struggling with this situation motivates me to find alternatives to handle it. Thank you very much to this foundation for helping others. I serve God through dance and it is very difficult for my problem but this foundation has helped me to know that if I can cope with God's help and the necessary information that this page provides me

 
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Rating: 5 stars  

Have been a member for many years. Have been dx at 30 years but shakey since 20. This is the one place that gives information for all ages. More information about it needs to get ut to the general public, most are ignorant of ET. Only know Parkinson's! I am a retired RN and hope new nurses are instructed about ET.

 
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Role: Professional with expertise in this field
Rating: 5 stars  

Best charity in the essential tremor field! Thank you

 
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Rating: 5 stars  

I have had Essential Tremors for thirty years. I had been on all of the medication prescribed for them and eventually they had stopped working for me. I found the Essential Tremor website and began researching all of the different solutions including DBS( deep brain stimulation) surgery. My neurologist had suggested this surgery to me in 2009 and I had told her no but as I read the results and watched the videos of the people who had the surgery, I began to change my mind and decided to try it. I had the surgery in Omaha on July 26 and when my neurologist turned on my stimulator on August 30, I no longer had any tremors in my hands or my voice. I think the International Essential Foundation website was the turning point for me and it has changed my life.

 
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Rating: 5 stars  

my experience with the international essential tremor Foundation has been life changing I found it after I was diagnosed in 2012 with et and was inspired to raise awareness and be apart of their support group online. Not one of my friends or family beleived that I had et they thought I was making it up to get attention. Needless to say I got rid of all the negative people in my life and raising awareness in my neighborhood about et to eventually start a support group in my area. This would not have been possible if I did find the ietf who have given me total support.

 
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Rating: 5 stars  

1 person found this review helpful

I am support group leader of IETF from India. I have always been supported and guided by IETF. This is the best and oldest organization for people with Essential Tremor with latest Information of medications and treatments available for ET .This Organization is working for ET from 1988, before I was born, its great! They provide there best help and assistance to execute any idea which I have and can raise awareness for ET.

 
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Rating: 5 stars  

They have helped me get a Support Group going. They have been very helpful. The website is OUTSTANDING! It has LOTS of good info. I have really appreciated the support that I have gotten. Thanks IETF.

Bob Kolquist
Abilene, TX

 
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Rating: 5 stars  

1 person found this review helpful

My son was diagnosed with ET when he was 6. The caring people at IETF sent us information on everything from dealing with ET to helping teachers with students who have ET. They put out info on finding Doctors, support groups, DBS, and have a great magazine called Tremor Talk. There are Scholarships, March awareness month, and I really can't imagine how we would have gotten all the help and support with this life altering condition with out them.

 
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Rating: 4 stars  

I am just now signing up for any organizations that can provide information, or help with ET. I have had the tremors all my life now that I am getting older and have had some very stressful events occur my tremors are effecting my personal life and my job drastically. I am seeing a Neurologist and have tried all the meds, but for some reason or another I have had severe side effects. I do take the Xanax and have for many years I am aware of the long term side effects, but it is the ONLY thing that allows me to function at a minimal.

My doctor told me that the FDA approved an ultrasound procedure and the closest medical center preforming it is Stanford Medical Center. I have emailed them several weeks ago and I am very interested in a less invasive procedure than Deep Brain Stimulation. I have not heard back; however, I am so looking forward to this treatment it sounds promising.

I am also dealing with lower back problems and surgery has been suggested by many doctors. I would like to take of my health issues and have the results be successful, so I can function in my personal life and at work. My job is getting increasingly challenging with the back pain and my tremor's I do not know how much longer I can continue to work. It has become very difficult. :(

If anyone has any other information, or how I can get a response from Stanford please let me know. I live by myself and it is challenging as you all know to take care of everyday life situations. I am trying to stay positive while I wait to hear back from Stanford.

Any suggestions please share it would be much appreciated.

 
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