Programs and results
What we aim to solve
Essential tremor is the most common movement disorder in the world affecting an estimated 10 million people in the United Sates alone to some varying degree. The International Essential Tremor Foundation (IETF) provides hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
ET Community Awareness/Education Seminars
The program provides those affected by ET living in various cities across the U.S., a free three hour educational program presented by a neurologist and neurosurgeon about the diagnosis process and treatment options for people living with ET. It gives the patients a chance to ask questions of the health care professionals, gives them an opportunity to get to know the IETF staff and enables them to make friends with people who experience the same challenges. The program has been selected for funding by the Medtronic Corporation. It is planned to facilitate events in selected cities each year.
IETF Support Groups
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.
IETF Research Program
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.
IETF Awareness Campaign
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.
ET Information Resource
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.
Virtual Education Programs
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.
Where we work
Awards
External reviews

Videos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
The IETF's goal is to provide education and increase awareness for essential tremor, the most common movement disorder in the world, with funding and promoting research that will find a treatment and hopefully someday a cure for essential tremor.
What are the organization's key strategies for making this happen?
The IETF hosts educational events year round through ET Education forums, teleconferences, and webinars. We also fund 2-3 research grants each year along with assisting in recruitment for a variety of clinical trials around the world. We increase awareness through a variety of channels including our website, direct mail, social media, and working with our partners in the ET community.
We have also added new webinars and podcasts to our educational materials. Our new webinars have been viewed over 9,000 times and our podcasts have over 900 downloads.
What are the organization's capabilities for doing this?
The IETF is able to implement these strategies with the hard work of our staff, volunteers and partners. With a database with over 22,000 active contacts we are able to communicate through direct mail, email and and social media a variety of opportunities to promote educate and awareness, opportunities to engage in clinical trials, and fund raise to continue to grow. We are uniquely positioned to accomplish these goals by being the most reliable, accurate, and up to date source of information on ET in the world.
What have they accomplished so far and what's next?
One thing we have accomplished recently is an increase in partnerships with pharmaceutical and medical device companies interested in creating products for the treatment of ET. These companies have supported us financially and by sharing information about the IETF with their audiences, and expanding our reach to the ET community. Our biggest challenge is a lack of awareness and these companies have allowed us to reach people we could not touch. One goal we have not been able to accomplish is a national awareness campaign. We would like to have a campaign combining print and media promoting the IETF as the best source of information for ET related questions.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
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International Essential Tremor Foundation
Board of directorsas of 11/10/2022
Dr. Kelly Lyons
Director of Research, KU Medical Center, Dept of Neurology
Term: 2012 - 2022
Shari Finsilver
N/A Philanthropist
Kelly Lyons
KU Medical Center
Patrick Reidy
Monaco, Sanders, Racine, Powell & Reidy LC
Paul Rodden
Highpoint Financial Group
Paula Nauer
Nathan Fiser
Fiser Group
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
Sexual orientation
No data
Disability
No data