GOLD2022

International Essential Tremor Foundation

Lenexa, KS   |  www.essentialtremor.org

Mission

The International Essential Tremor Foundation provides hope to the essential tremor (ET) community worldwide through awareness, education, support, and research.

Ruling year info

1995

Executive Director

Mr. Patrick McCartney

Main address

PO Box 14005

Lenexa, KS 66285-4005 USA

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Formerly known as

International Tremor Foundation

International Tremor Foundation

EIN

36-3847816

NTEE code info

Neurology, Neuroscience (G96)

Neurology, Neuroscience (H96)

Alliance/Advocacy Organizations (P01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults
Children and youth

Where we work

Awards

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

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.

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.

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

International Essential Tremor Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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  • Compare nonprofit financials to similar organizations

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International Essential Tremor Foundation

Board of directors
as of 11/10/2022
SOURCE: Self-reported by organization
Board chair

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

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 12/13/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data