International Essential Tremor Foundation

The development of Support Groups is essential to the total well being of those with essential tremor (ET). For those persons affected, many psychological hurdles must be overcome and ways to cope are a must. This program is dedicated to increasing exposure to ET through a voluntary group run by a volunteer leader who can gather persons together to discuss, learn and find ways for those with ET to lead a healthy productive life. An ET support group is an informal, self-managed, self-help group. It is not a therapy group or 12-step program. An ET support group is a source of information and practical suggestions about ET and about the IETF. It is not a substitute for medical treatment, personal or health counseling.

The IETF grant program provides funds to members of the scientific community who submit proposals that address the nosology, etiology, pathogenesis, treatment or other topics relevant to essential tremor (ET). The aim of program is to stimulate inquiry into this poorly understood clinical disorder and to provide support to projects that are innovative and give promise of receiving more substantial support from NIH, K Award, R01 and/or other sources if sufficient preliminary information can be obtained from projects supported by the IETF. Preference will be given to individuals who do not currently have any R01 support from NIH.

In December 2010, Congress passed a House resolution that officially designated March as "National Essential Tremor Awareness Month." National Essential Tremor Awareness Month provides those with ET and their families a key platform where the IETF can educate the public about the condition, as well as raise much needed funds for greater awareness. While 10 million people in the United States have essential tremor, the public still has very little awareness of ET and can often confuse it for Parkinson's disease. Because the condition can be treated in many cases, it is important for people to seek help early if they exhibit symptoms. With March as National ET Awareness Month, we can bring attention to ET through press releases, letters to the editors, fundraisers, awareness activities, and local community events. National ET Awareness Month raises the visibility of essential tremor to the forefront.

The IETF employs an array of communication platforms to share current, accurate information about ET at its website located at www.essentialtremor.org. The IETF distributes a printed news magazine "Tremor Talk" that is published three times a year, provides a blog located at TremorTalk.org; distributes a monthly electronic newsletter called TremorGram and has a presence on Facebook, Google Plus, and Twitter. The IETF is very proud of the printed materials that is continues to provide the varied age group so the elderly are not forgotten. In many cases, access to a computer and printer are not readily available for the poor or disadvantaged so the IETF remains committed to making those materials available at no charge.

Starting in September of 2020 the IETF began a virtual education series including podcasts a webinars. The podcast series has close to 10,000 downloads while the webinars have been viewed over 60,000 times on our YouTube page.

We also hosted our inaugural Virtual ET Education Conference on October 29, 2022. More than 1,800 people registered for this event. All the sessions were recorded and available on our YouTube page.