International Essential Tremor Foundation
PO Box 14005
Lenexa KS 66285-4005
Web and Phone Contact
Telephone (913) 341-3880
Mission Statement
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.
Leadership
CEO/Executive Director Mr. Patrick McCartney
Board Chair Ms. Kelly Lyons Ph.D.
Board Chair Company Affiliation Director of Research, KU Medical Center, Dept of Neurology
History and Background
Year of Incorporation 1984
Former Names
International Tremor Foundation
International Tremor Foundation
Financial Summary
Revenue Expense Area Graph

Comparing revenue to expenses shows how the organizations finances fluctuate over time.

Source: IRS Form 990

 Breakdown
Net Gain/Loss:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.
Statements
Mission Statement 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.
Background Statement The International Essential Tremor Foundation (IETF) was founded by two physicians in 1988 due to the high incidence of a condition known as essential tremor (ET). At that time, these physicians recognized that very little educational information was available to physicians and patients, no research in ET was being done, there were few effective treatments and there was no support for the patient. ET is the most common and prevalent of all neurological conditions. It is now estimated that up to 10 million people in the US alone suffer from this disorder. In most of the cases, the condition is hereditary. The condition is transmitted as an autosomal dominant inheritance, which means that the offspring of an affected individual will have a fifty-percent chance of also developing the condition. The average age of onset is 45 years. The IETF is a non-profit 501(c)(3) organization that focuses on funding research, increasing public awareness, providing educational information to patients, the public and physicians, providing a physician referral service, developing support groups across the country and providing printed and electronic publications that keep people educated and informed about ET. The mission and related programs to carry out the mission continues to grow and improve. The organization continues to have a significant impact in communities across the US. There is no other national organization dedicated to supporting and enhancing the quality of life for people diagnosed with ET through education and support, educating the physician or funding ET research. The organization has reached out in community newspaper ads to reach 1,160,873 people across the nation, provided 50 healthcare expert presentations and this year alone personally touched the lives of 1,967 attendees of Education Events. Education scholarships were provided to 5 young people diagnosed early with ET and since 2011, the IETF has provided 21 scholarships to deserving students. To date 94,000 physicians and healthcare providers have been better educated and the IETF has presented 385 community education programs for patients, physicians and the public.
Impact Statement
In FY 2017, the IETF met its goals:
  1. Increased public awareness about essential tremor (ET) through the celebration of March as National ET Awareness Month and at the same time created greater public support for awareness.
  2. Educated the public and healthcare providers about the difference between ET and Parkinson's disease.
  3. Provided $75,000 in grant support to scientists to fund important ET research.
  4. Published three news magazines entitled Tremor Talk, sent out monthly electronic newsletters to keep the patients and physicians better informed. These publications contained articles about research advances, coping tips, appropriate treatments, methods for diagnosis, notices of research studies and information about support groups.
  5. Facilitated community education programs throughout the U.S. to help improve quality of life and provide accurate information to those affected by ET.
  6. Displayed educational materials at national healthcare conferences to increase the knowledge of healthcare providers in providing an accurate diagnosis and appropriate treatments for ET.  This fiscal year we also created a teleconference series. The first teleconference covered diagnosis and treatment options for ET and the second call 's topic was ET research projects past present and future. The IETF continues to support social media through FaceBook, Twitter, Google Plus, the TremorTalk blog at TremorTalk.org and YouTube. See the annual report attached.
Needs Statement
  1. Volunteers to help support the clerical functions in the office.
  2. In-kind donations of  printing and marketing expertise.
  3. Donations to support ET Awareness Month in March of each year. The push each year to increase the outreach will bring greater awareness to those with ET, healthcare providers and education of the public. The awareness is essential to ensure that improved treatment plans are developed by healthcare providers through the dissemination of appropriate educational materials, that patients have access to learning about coping skills and are provided educational materials to improve quality of life.
  4. Donations to increase research funding to find the cause of ET. The cause must be identified so better treatments/medications can be developed.  To date, there are no medications that have been developed for essential tremor.
  5. Donations to help develop and maintain support groups throughout the US. Support groups help people cope and provide valuable educational information to attendees. Leaders are an important part of the organization in that they are the key to providing hands on help in communities nationwide. Expenses would include printing of educational materials and funds to help offset costs for meeting rooms.
Service Categories
Neurology & Neuroscience
Neurology & Neuroscience Research
Alliances & Advocacy
Areas of Service
International
National
MO
KS
MO - Jackson County
MO - Clay County
MO - Platte County
KS - Wyandotte County
KS - Johnson County
MO - Eastern Jackson Co
MO - Jackson County Urban Core
AL
AK
AZ
AR
CA
CO
CT
DE
FL
GA
HI
ID
IL
IN
IA
KY
LA
ME
MD
MA
MI
MN
MS
MT
NE
NV
nH
NJ
NM
NY
NC
ND
OH
OK
OR
PA
RI
SC
SD
TN
TX
UT
VT
VA
WA
WV
WI
WY
KS - Wyandotte County Urban Core
CEO/Executive Director/Board Chair Statement

One of the greatest challenges is finding enough funding to continue to grow and provide the programs and services that are needed to enhance the programs that are currently being provided for a condition that is considered benign by healthcare providers and even those that have ET. Most people do not develop a significant disability until late in life so there is no real urgency to support and fund an organization when a poor prognosis is so far away – at least in the minds of those with mild tremor. For people with essential tremor, it is critical for them to understand that people diagnosed with essential tremor understand that there are some treatments that may be helpful, not just for the severe cases, but also for those that have a mild to moderate tremor. So the IETF mission in providing support, greater awareness and education meets the need for all people with essential tremor find a better quality of life. In addition, the funding of research will provide an opportunity to find better treatments and eventually a cure. First, the IETF has a significant physician referral service so individuals can find an appropriate physician. Second, increasing awareness through greater outreach to an expanded market help educate more people. Third, the IETF meets the need to educate utilizing the website with free downloads, Essential Tremor Awareness Month as noted above, through social media, free educational handouts are provided to healthcare providers for distribution to patients, a monthly electronic newsletter called Tremor Gram is emailed to interested individuals as well as a printed magazine called Tremor Talk is published every four months and mailed.  Fourth, research is a major commitment for the IETF. Working together with the National Institutes of Health and the National Institutes of Neurological Disorders and Stroke, the IETF is committed to providing seed grants to promising researchers to find the cause of ET. Due to IETF efforts, there have been many successes and we are proud to say that over the years the IETF has mailed information to over 150,000 families who have been affected by ET. In addition, The IETF has reached over 90,000 health care providers with educational materials and the organization has grown from an annual budget of $30,000 to an annual budget of approximately $600,000. Without help from local, regional, state or federal funding, the organization is proud of its growth rate and the quality programs it now brings to the world with the help of funding from its donors and corporate sponsors. In 1994, the IETF had 17 support groups across the U.S. and in FY17 supported over 60 groups. To keep all programs running smoothly the office has grown from a staff of one to three full time staff members that manage the programs and business of the IETF. Considerable attention is paid to administrative overhead and fundraising costs so there is ample funding for IETF programs to help those we serve.

Programs
Description 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.
Program Budget $75,000.00
Category Diseases, Disorders & Medical Disciplines, General/Other Nervous System Diseases
Population Served Adults, Children and Youth (0 - 19 years), Children Only (5 - 14 years)
Short-Term Success Short term success is determined by the number that attend and the completion of the attendee survey at the end of the presentation. The program aims to improve the lives of those with ET by providing the diagnosis process and treatment options. We depend on the surveys to determine the attendees response and determine the future changes that need to be made.
Long-Term Success The program is determined a success based on the numbers that attend (75-100 is considered successful attendance), completion of the attendee survey at the time of the event and a 6 month followup to see how attendees are doing - are they coping, getting adequate treatment, is the condition improved, did the information help them, etc ...
Program Success Monitored By Over the last 3 years, many things have been changed to improve the program. For example, in the beginning fewer than 35 people showed up to the events because the information was not getting to the public. Consequently, a full time staff member was hired to make sure the event was properly marketed to ensure that the information got distributed throughout the community. This additional staff member has helped outcome substantially. Attendance has increased from 35 to over 100. In addition, the attendee surveys were revised 4 times in order to make sure we obtained the information we needed to determine success. We eliminated unnecessary questions so the surveys were shorter and easier to complete (persons with ET have a great deal of difficulty writing). Now, the community events work smoothly and there are few glitches.
Examples of Program Success The event surveys revealed the following: The events met expectations – 96% Individuals learned new information about tremor – 92% Individuals learned information that could help them – 79% Would recommend attendance to others – 99% Seventy-eight percent of the attendees wrote that they were extremely appreciative of the information and the chance to visit with the physician on an individual basis.
Description 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.
Program Budget $5,000.00
Category Health Care, General/Other Patient & Family Support
Population Served Adults, ,
Short-Term Success As has been stated above the groups are unique but we determine success when a support group leader is identified and the first meeting is held - regardless of the number attending. The value to each person is tremendous as is reported by the members of the group as well as the leader. Numerous stories have been written and published in the Tremor Talk, the IETF member newsmagazine about how support groups have helped people change their lives.
Long-Term Success An ET support group is as unique as its membership. The interests and capabilities of support group members vary greatly, and change over time. It is not uniformity that counts, or meeting a standard. Rather, it is making the most of what each group has to offer its members at any given time. In that vein, success is defined as "providing support, even to one person, where needed". It is in helping people overcome the social stigma, in educating and teaching others with ET about how to live with the condition to obtain a good quality of life, it is in the teaching and learning about the treatment options.
Program Success Monitored By We know from 10 years of experience what works and what doesn't. Generally, the group will wax and wain with people coming and going as their needs are met or new needs are discovered. The groups reach greater success when including all members in the process of group development, such as asking one to bring refreshments and another to take roll call. The groups also are more successful when they introduce wellness programs to the monthly meeting and invite speakers. Getting acquainted and learning about ET is only part of a healthy lifestyle and groups that encourage exercise, group activities, and overall wellness are the most successful.
Examples of Program Success Groups that continue to thrive reach their membership level goals and the members are happier and willing to get involved. Since, 1998, over 90 support groups have been developed with only 10 of those groups failing to thrive. New leaders were found for those groups and they are now once again reaching success. Some groups have succeeded so well that they have over 200 members and are still growing. Healthy groups also change leaders after a couple of years allowing new people to take on the leadership role. We look for the sharing of responsibilities as a key indicator of group success as well as strong leadership skills.
Description
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.
Program Budget $75,000.00
Category Medical Research, General/Other Medical Specialties Research
Population Served Adults, ,
Short-Term Success
We are currently funding two to three research proposals each year that investigate the cause of ET. These grants are very important because they are currently not being funded by the National Institutes of Health and they encourage researchers who otherwise would not be able to obtain funding elsewhere. We hope to continue funding each year as many research proposals as funds allow. Simply said - the more research contributions received the more funding of research proposals.
Long-Term Success
The IETF is striving to help find a cause and someday a cure for ET. Finding the cause is essential before pharmaceutical companies will engage and assist in the creation of new medications. Without knowing the mechanism of the condition, it is virtually impossible to begin new drug development. It would be like looking for a needle in a haystack. As the IETF continues to fund new research each year we are getting closer to finding answers. It is our hope to encourage more scientific interest in ET.
Program Success Monitored By
The program success is monitored by the Medical Advisory Board and Board of Directors. The Medical Advisory Board is comprised of world renown neurologists whose training is in movement disorders. Each investigator is provided funding in two parts - an initial award of half the total grant and the final award is paid after the investigator submits a progress report midway through the grant year. A final summary is required and provided to the board members at the end of the project.
Examples of Program Success
All of the research has been successful leading to new hypothesis or a discovery that the research leads to a dead end thus removing the need to follow the same path. We also consider additional funding provided by the National Institutes of Neurological Disorders and Stroke (NINDS) to further examine the findings and assist in the development of larger grants and more funding to be of extreme value. For instance, awarding a small grant to a physician to begin a brain repository in New York proved successful and NINDS provided funding for several more years to help develop the research surrounding the brain to help find the cause of ET. All of the research funded to date can be found on our website www.essentialtremor.org
Description 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.
Program Budget $50,000.00
Category Health Care, General/Other Health Care Issues
Population Served Adults, ,
Short-Term Success
Short-term success can be measured using the number of materials that are distributed. Since this is the first year for this new program we are learning as we go along about what works best. The announcement will be made over the newswire and since we can't possibly know of all the stories that will appear in newspapers and the web across the U.S. we can only report on what we ultimately find out. In addition, we will send out educational materials and posters to 414 physicians and we have mailed an announcement to 21,000 people with ET in our database about activities and ways to increase awareness. We will tabulate the results of those activities at the end of the month. For more information about the activities please visit our website at www.essentialtremor.org
Long-Term Success
It is our goal to increase the public awareness about ET equal to that of Parkinson's disease or Alzheimer's disease. Currently there is little awareness of this common condition. When someone sees a person shake they often think of a drug or alcohol problem and even Parkinson's disease. ET is 8 times more prevalent than Parkinson's disease and is the most common movement disorder. Increasing awareness will help people with ET overcome the embarassment and humiliation often experienced. It will also help the public understand the disability that is often associated when the condition worsens and the psychological aspects associated. Depression is often experienced by those with ET because of a lack of understanding. We hope that the celebration of awareness month every year will help overcome some of these obstacles that people with ET must face.
Program Success Monitored By
Program success will be monitored by IETF staff. The number of community activities will be tabulated at month end and a report will be developed for the membership and the board of directors. I am sure we will know more next year and look at ways to improve. But for now, we have not run into any stumbling blocks.
Examples of Program Success
Program success has expanded considerably since 2010.  The IETF helps support new walks in various communities across the U.S. every year with 50-60 walkers in some of the communities. There are over 250 awareness posters distributed to physicians offices and placed on bulletin boards in public areas and 500 pieces of literature are distributed to support groups to distribute in their communities. Press releases are sent to 50 media sources and a few local newspapers picked up the story. Awareness month activities are prevalent through the IETF Facebook page, Twitter Feed, Google Plus and on the website. 
Description
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.
Category Diseases, Disorders & Medical Disciplines, General/Other Diseases & Disorders
Population Served Adults, ,
Short-Term Success The short-term success would be the number of people accessing the website and or blog, opening the electronic newsletter, subscribing to the news magazine, requesting information.
Long-Term Success Patients and those affected will be better informed and the quality of life is likely to improve. There is no other way to gather the information than to survey those that acquired the information. A survey will be developed and sent to all individuals who the IETF has had contact with in the past fiscal year to determine success rate.
Program Success Monitored By Google analytics, website and blog tools that gather data, number of people who access the online sites or request information, number of materials distributed.
Examples of Program Success The most heartwarming stories are located on www.essentialtremor.org/coping/personal-storiessharing/ where anyone can read the multitude of stories about how the IETF changed their lives.
CEO Comments Programs include building awareness through community awareness/education seminars, increasing the number of support groups across the U.S., providing a larger segment of the public with educational information, improving the support for people with ET in local communities with local outreach and funding research. Reaching 10 million people who have been diagnosed with ET is not an easy or small job. Despite the fact that millions have ET; the public is still unaware of ET or the IETF. That means many people aren’t aware of the medical treatments and support groups that can help them. Many are likely living in isolation because they are embarrassed by their condition. The IETF continues to develop a grassroots approach to reach the many people affected. This is what the IETF began in 2004 and it continues today. In collaboration with local hospitals and physicians nationwide, local community awareness seminars bring information and awareness to individuals and families affected by ET as well as to the general public. Funding has been provided by the Medtronic Corporation for the seminars. The seminars provide information about the diagnosis and treatment options for those with ET. The success of the program has enabled the IETF to receive continued funding. We are delighted to bring this information directly to the people that need it the most. In addition, there are now a total of 60 support groups, a robust information service, and a thriving research program that awarded three more researchers a total of $75,000 in FY16.
Executive Director/CEO
Executive Director Mr. Patrick McCartney
Term Start Aug 2015
Compensation $75,001 - $100,000
Experience The IETF Board is pleased to announce Patrick McCartney as the new IETF Executive Director, effective August 17, 2015. Patrick brings over 20 years experience with non-profit organizations. He most recently served as the Executive Director of the Kansas City Kansas Community College Endowment Association. Previously, Patrick was Vice President of Marketing at the Kansas City Kansas Chamber of Commerce. His work experience focused on board relations, fiscal management, marketing and communications, and fundraising.
Co-CEO/Executive Director
Term Start 0
Compensation Last Year
Former CEOs
NameTerm
Ms. Catherine S Rice Sept 1998 - Sept
Staff
Paid Full-Time Staff 3
Paid Part-Time Staff 0
Volunteers 80
Paid Contractors 1
Retention Rate 100%
Staff Diversity (Gender)
Female 2
Male 1
Formal Evaluations
CEO Formal Evaluation Yes
CEO/Executive Formal Evaluation Frequency Annually
Senior Management Formal Evaluation Yes
Senior Management Formal Evaluation Frequency Annually
Non-Management Formal Evaluation Yes
Non-Management Formal Evaluation Frequency Annually
Plans & Policies
Organization Has a Fundraising Plan Yes
Organization Has a Strategic Plan Yes
Management Succession Plan No
Organization Policy and Procedures Yes
Nondiscrimination Policy Under Development
Whistleblower Policy Yes
Document Destruction Policy Yes
Collaborations
Community Health Charities, The Midwest Neurological Coalition, The National Institutes of Neurological Diseases and Stroke, DANA for Brain Awareness, The Genetic Alliance, American Brain Coalition, FasterCures, Alliance for Aging Research, CAN-Cures Acceleration Network, Coalition for Health Funding, Great Nonprofits, One Mind Neuroscience, Patient Crossroads, Nonprofit Congress, American Academy of Neurology, Medtronic Corporation, GE Healthcare, Focus Ultrasound Foundation, Tremor Action Network, and Movement Disorders Society.
Awards
Award/RecognitionOrganizationYear
Philly Awards for Non Profit MarketingNon Profit Connect2016
Government Licenses
Is your organization licensed by the government? No
CEO Comments Members of the International Essential Tremor Foundation play an active role in the mission, values and goals of the organization. The board understands the accountability issues and the social responsibility of their position. Monthly financials are provided to the the board. The Executive Director also provides a monthly analysis of revenue and expenses that is attached to the financial report. The Executive Director prepares quarterly operational reports and these are emailed quarterly to the board. An annual budget is developed and approved by the board. Budget versus revenue and expenses are tracked. The organization received one major grant this year; from the Medtronic Foundation to further awareness activities and improve support for those with ET within the local community. Please also see the program section.
Board Chair
Board Chair Ms. Kelly Lyons Ph.D.
Company Affiliation Director of Research, KU Medical Center, Dept of Neurology
Term Apr 2012 to Apr 2018
Email kelly.lyons@att.net
Board Members
NameAffiliation
Ms. JoDene Coleman Freelance Graphic Designer
Ms. Shari Finsilver N/A Philanthropist
Mr. Mitchell Fiser The Fiser Group
Mr. Peter LeWitt M.D.Private Practice
Ms. Kelly Lyons Ph.D.KU Medical Center
Mr. Patrick Reidy Monaco, Sanders, Racine, Powell & Reidy LC
Mr. Paul Rodden Highpoint Financial Group
Mr. Heath Steele
Board Demographics - Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 8
Hispanic/Latino 0
Native American/American Indian 0
Other 0
Board Demographics - Gender
Male 5
Female 3
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 2
Board Meeting Attendance % 100%
Written Board Selection Criteria? Yes
Written Conflict of Interest Policy? Yes
Percentage Making Monetary Contributions 75%
Percentage Making In-Kind Contributions 12%
Constituency Includes Client Representation Yes
Number of Full Board Meetings Annually 4
Standing Committees
Executive
Finance
Advisory Board Members
NameAffiliation
Roy A.E. Bakay M.D.Rush Presbyterian St Lukes Med Cntr - Chicago
Julian Benito-Leon MD, PhDUniversity Hospital, Madrid Spain
Arif Dalvi MDUniversity of Chicago
Rodger Elble M.D., Ph.D.Southern IL University Hospital - Springfield, IL
W Jeffrey Elias MDUniversity of VA Health System
Leslie J Findley M.D.Essex Neuroscience Unit-Queens Hosptial-England
Cole Giller MDGeorgia Health Sciences University
Mark Hallett National Institutes of Health - NINDS
Adrian Handforth MDVA West Los Angeles Health Center
Dietrich Haubenberger MDMedical University of Vienna (Austria)
Arif Dawood Herekar M.D.Taj Medical Center, Karachi Pakistan
Joseph Jankovic M.D.Baylor Medical Center-Houston, TX
Michael Johns, III MDEmory University Voice Center
Amos D Korczyn M.D.Tel Aviv University School of Med.-Tel Aviv, Israel
Anthony E Lang M.D.The Toronto Hospital, Toronto, Canada
Peter LeWitt M.D.Henry Ford Hospital, West Bloomfield, MI
Elan D Louis M.D.Neurological Institute, Columbia Univ.-New York, NY
Kelly E Lyons Ph.D.Kansas University Medical Center-Kansas City, KS
Fatta Nahab MDUniversity of Miami
William Ondo M.D.Baylor Medical Center-Houston, TX
Jill Ostrem MDUCSF Department of Neurology
Michael Pranzatelli MDSouthern Illinois University School of Medicine
A.H. Rajput M.D.Royal University Hospital-Saskatoon, SK Canada
Sara Salles M.D.University of KY Med Center-Lexington, KY
Ludy Shih MDBeth Israel Deaconess Medical Center - Boston
Holly Shill MDBanner, Sun Health Research Institute
Mark Stacy M.D.Duke University-Durham, NC
Claudia Testa M.D., Ph.D.Emory University, Dept of Neurology-Atlanta,GA
Jay VanGerpen MDMayo Clinic Jacksonville
Theresa Zesiewicz MDUniversity of South Florida - Tampa
CEO Comments Members of the International Essential Tremor Foundation play an active role in the mission, values and goals of the organization. The board understands the accountability issues and the social responsibility of their position. Monthly financials are provided to the the board. The Executive Director also provides a monthly analysis of revenue and expenses that is attached to the financial report. The Executive Director prepares quarterly operational reports and these are emailed quarterly to the board. An annual budget is developed and approved by the board. Budget versus revenue and expenses are tracked. The organization received one major grant in FY16 from the Medtronic Corporation. to further awareness activities and improve support for those with ET within the local community. Please also see the program section.
Financials
Fiscal Year Start Apr 01, 2017
Fiscal Year End Mar 31, 2018
Projected Revenue $632,900
Projected Expenses $560,990
Form 990s
Audit Documents
IRS Letter of Exemption
Foundation Comments
  • FYE 3/31/2016, 2015, 2014: Financial data reported using IRS Form 990. 
  • Foundation/corporate revenue line items may include contributions from individuals.
Detailed Financials
 
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201620152014
Foundation and
Corporation Contributions
$453,949$167,076$331,308
Government Contributions$0$0$0
Federal$0----
State$0----
Local$0----
Unspecified$0$0$0
Individual Contributions$0----
$0$1,175$1,750
$25,409$58,354$19,869
Investment Income, Net of Losses($32,790)$8,038$8,154
Membership Dues$382,321$361,864$331,829
Special Events$32,974$30,529$18,670
Revenue In-Kind$0$0$0
Other$0($8,762)($6,718)
Expense Allocation
Fiscal Year201620152014
Program Expense$474,873$584,852$497,043
Administration Expense$72,574$90,805$73,965
Fundraising Expense$24,188$44,982$40,807
Payments to Affiliates$0----
Total Revenue/Total Expenses1.510.861.15
Program Expense/Total Expenses83%81%81%
Fundraising Expense/Contributed Revenue5%23%12%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$1,975,307$1,663,729$1,779,930
Current Assets$1,366,508$1,231,534$1,343,890
Long-Term Liabilities$0$0$0
Current Liabilities$13,395$27,809$41,645
Total Net Assets$1,961,912$1,635,920$1,738,285
Short-Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities102.0244.2932.27
Long-Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets0%0%0%
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountIndividual Donor $230,791Individual Donor $50,000 --
Second Highest Funding Source & Dollar AmountIndividual Donor $63,293Individual Donor $44,737 --
Third Highest Funding Source & Dollar AmountMedtronic Corporation $55,000Individual Donor $20,000 --
Capital Campaign
Currently in a Capital Campaign? No
Capital Campaign Anticipated in Next 5 Years No
Organization Comments In 1988 the IETF was founded through the collaboration between two physicians with a common spirit of concern and passion for people diagnosed with essential tremor (ET). The founder and co-founder are no longer with the IETF and in fact have passed, but the spirit they infused into the IETF remains. This spirit is evident within the Executive Board whose members take seriously their fiduciary and ethical responsibilities, and their stewardship of funds. The IETF is privileged to have a quality board that is lead by a dedicated and passionate president, Kelly Lyons. Because the board, staff and executive director take their responsibilities seriously, we re-commit our allegiance to you, the people we serve. The ET community deserves and expects the highest standards from the IETF. So in turn, the IETF board promises to: • Manage with care donated funds. • Value all support and honor all requests. • Guard the trust the donor and people affected by ET have placed in the board. • Remain loyal to people with ET. • Act ethically, and in good faith without regard to personal interests. • Assure that laws are followed. It is through this commitment that the IETF can continue to be a credible resource for persons diagnosed with ET as well as their family and friends. Each year presents new opportunities to increase public awareness about ET through targeted marketing and the media. The IETF Volunteer Program that includes the support group leaders is strong and support is increasing. This past year, new support groups were developed and older groups maintained, literature was updated that featured coping tips, broader range of medications and  facts about ET. Three research proposals were funded. The IETF completed a series of webcasts and webinars and have secured a national ET Awareness Month in March through the support of congress. The IETF was awarded one new grant to increase awareness and provide ongoing education to people with ET through additional Community Awareness/Education Seminars across the U.S.
Organization Name International Essential Tremor Foundation
Address PO Box 14005
Lenexa, KS 662854005
Primary Phone (913) 341-3880
CEO/Executive Director Mr. Patrick McCartney
Board Chair Ms. Kelly Lyons Ph.D.
Board Chair Company Affiliation Director of Research, KU Medical Center, Dept of Neurology
Year of Incorporation 1984
Former Names
International Tremor Foundation
International Tremor Foundation