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International Essential Tremor Foundation

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Nonprofit Overview

Causes: Brain Disorders Research, Health, Neurology & Neuroscience, Voluntary Health Associations & Medical Disciplines

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

Community Stories

58 Stories from Volunteers, Donors & Supporters

4

Client Served

Rating: 5

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.

General Member of the Public

Rating: 5

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

Donor

Rating: 5

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.

Professional with expertise in this field

Rating: 5

Best charity in the essential tremor field! Thank you

Martha H.2

Client Served

Rating: 5

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.

Volunteer

Rating: 5

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.

1

Volunteer

Rating: 5

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.

Volunteer

Rating: 5

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

1

Donor

Rating: 5

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.

Volunteer

Rating: 4

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.

General Member of the Public

Rating: 4

I was finally diagnosed with ET (hand tremor) in 1983 at the age of 32. I was about 10 years old when I first noticed that my hands would shake, especially in stressful situations. At the time (and for many years), I thought it was just a "nervous condition". My father also had a hand tremor so I thought I had inherited his nervousness. I have had a wonderful response to my hand tremor using Propranalol - feel extremely fortunate! However, in my late 30s, I started with a tremor also in my head. It has been a long journey with an amazing Neurologist to finally have some relief from my head tremor with Botox injections in my neck. My son, now 39, also has a hand tremor that started at the age of 3. He accepts the tremor as it is & has made a choice not to seek treatment at this point in his life. I have been a member of the IETF for many many years now and have been so grateful for ALL the information this organization provides... and for their efforts to do continued research for better ways to live with ET.

1

Donor

Rating: 5

IETF is an excellent source of information for those who want to learn more about essential tremor and how to cope with it. More importantly, IETF funds essential tremor research and advocates for additional government funding to treat and cure ET.

2

Volunteer

Rating: 5

I was diagnosed with "benign familial tremor", now known as Essential Tremor (ET) in my 20s, although it had manifested earlier. All through my life I'd hidden it. When a support group sponsored by the IETF started within 5 miles of my house when I was in my late 50s, I was elated that there were other folks with ET and excited to learn more about it. So, I volunteered to be co-leader of the group. The materials and support provided by IETF to the local support groups are excellent. It was through the IETF and the support group that I met doctors and other people and learned enough to be confident enough to go through with Deep Brain Surgery (DBS) or brain pacemaker surgery this past month. The DBS has made a tremendous difference for the tremor on my left side. I will be talking to folks next month about my experience and the IETF volunteer coordinator is sending out a flyer for me to folks in my area.

3

General Member of the Public

Rating: 5

I once had a beautiful hand writing that amazed people. I enjoyed adapting my penmanship and creating different styles. Then my hands starting shaking and I could hardly write legibly. I was fortunate to find an excellent neurologist who also has ET. He understands the physical as well as the social difficulties.
When I found an ET support group, I was relieved to talk to others who understood. And even more happy to find the IETF. I wouldn't wish this on anyone, but am so thankful to learn how to live with this condition.

2

General Member of the Public

Rating: 5

The IETF has made living with ET much easier for me. I was diagnosed when I was about 35 but I had noticed this condition earlier and also had seen it in my Dad. I have 3 brothers and 2 sisters. All but one has ET. For me, it has progressed as I've aged and really only hinders me when eating, drinking, and personal grooming. However, due to the nature of this condition, when I have to speak in front of a group of people or play my guitar in public it can become a nightmare. The IETF through literature and posters they've made available have enabled me to increase awareness in my church, at my workplace, and in my circle of friends and family. This has limited the amount of questions I get asking me "why are you so nervous" or "why do you shake so much". Because of the IETF I have been able to consider myself "normal" and this has helped boost my confidence. This foundation has been a Godsend and I look forward to seeing more of what they can accomplish. Al Johnson

2

Volunteer

Rating: 5

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!

3

Volunteer

Rating: 5

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.

2 Barbara228

Donor

Rating: 5

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.

4 Divy B.

Volunteer

Rating: 5

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.

2 Sheila49

General Member of the Public

Rating: 5

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

2 Ken_47

Client Served

Rating: 5

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.....

1 Pam_98

Client Served

Rating: 5

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,

2

Client Served

Rating: 5

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.

2

General Member of the Public

Rating: 5

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!!

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Volunteer

Rating: 5

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

Volunteer

Rating: 5

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.

Client Served

Rating: 5

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.

Donor

Rating: 5

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.

Client Served

Rating: 5

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

Sandra74

Client Served

Rating: 5

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!

Donor

Rating: 5

I receive too many appeals from health related support outfits, and they are duplicative.I am diagnosed
with several chronic (non treatable) issues and gladly give even when they mail multiple requests. Annoying : Yes! But one must keep informed about personal health.

The IETF organization, which has been helpful to me since it began, is more than expected of a foundation.
Especially since full cure is a goal even though ET is not deadly, yet the Board and its Director are
closely in touch with all ongoing investigations and makes personal contact between "victims" by every
possible means from area gatherings to Webinars with actual researchers. At 90 years even tips
on using my Chrome tablet are useful and appreciated.

Thomas F Conlon Cpt USArmy Retired

Volunteer

Rating: 5

I am the most fortunate of ET patients, because at the time I was diagnosed with essential tremor, I was given material that introduced me to the IETF. I joined the foundation and from their literature I learned many facts of essential tremor that I had not known before. The most important fact, in my case, was to not be ashamed of my tremors. Without the embarrassment of my tremors, I was able to gain self-confidence and consequently was able to educate my family, friends, and strangers with presentations on essential tremor. The IETF has been the most valuable resource in providing guidance, written material for patients, doctors, and the public, and items such as pens and bookmarks to hand out at health fairs as well as brochures. The IETF has never let me down when I have requested an item or a notice to be sent out to members of a planned event or meeting. To me, it is the GREATEST of non-profits.

Barry16

Donor

Rating: 5

I was a dentist for thirty five years before I retired. Towards the end of my dental career I noticed that I had a slight tremor of my right hand sometimes after a difficult extraction of a tooth. After retiring I continued to have a slight tremor after doing any difficult or tiring activity that I would do with my right hand. I remembered that my father had some similar difficulties with his hands when he was very old. I realized that I had Essential Familial Tremor, but wasn't sure what to do about it. I looked it up on Google and somehow found out about the International Essential Tremor Foundation. Reading about the IETF, I decided to sign up for the Tremor Talk and make a donation. I have found the magazine very informative and and helpful in many respects. I read in the current issue of Tremor Talk that there will be a ET seminar in Philadelphia ( I live in Bucks County ) sometime in the near future and I hope to attend when the date is available. In the meantime I plan to see a Neurologist about medication for my tremor. Although my family doctor has prescribed Propanolol, the dosage is very small and she did not suggest building it up to higher levels. I hope to get more effective treatment from a Neurologist. Thank you for all you are doing to help those of us with E.T. Barry C. Platt, D.D.S.