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International Essential Tremor Foundation Organization Name provided in the GuideStar Exchange* as of 02/12/2014: International Essential Tremor Foundation

Organization Name as listed in the IRS Business Master File as of 10/17/2014: INTERNATIONAL ESSENTIAL TREMOR FOUNDATION

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Lenexa, KS
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GuideStar Summary

&1002; GuideStar Exchange Committed to transparency ?
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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

International Essential Tremor Foundation Organization Name provided in the GuideStar Exchange* as of 02/12/2014: International Essential Tremor Foundation

Organization Name as listed in the IRS Business Master File as of 10/17/2014: INTERNATIONAL ESSENTIAL TREMOR FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Physical Address: Lenexa, KS 66214 4005
EIN: 36-3847816
Web URL: www.essentialtremor.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G96 Neurology, Neuroscience
H Medical Research
P Human Services
P99 Human Services - Multipurpose and Other N.E.C.
Ruling Year: 1995 


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Mission Statement

The IETF mission is to fund research to find the cause of essential tremor that leads to better treatment and a cure, increase awareness, provide educational materials, tools and support for those affected by ET, healthcare providers and the public.

Legitimacy Information

This organization is registered with the IRS.

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

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Annual Revenue & Expenses

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February 2014)

Fiscal Year Starting: April 01, 2013
Fiscal Year Ending: March 31, 2014

Total Revenue --
Total Expenses --

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
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Forms 990 Provided by the Nonprofit

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Annual Reports

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Leadership

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Ms. Catherine Rice

Term:

Since Aug 1998

Profile:

Masters degree in Nonprofit Management. 14 years experience as Administrator of Neurology at the University of Kansas Medical Center. Extensive nonprofit experience at KU Medical Center. AFP Fundraising certificate. Has been with the International Essential Tremor Foundation for 15 years.

Leadership Statement:

When people see someone shaking, they usually think one of three things, (1) the person has Parkinson's disease, (2) the person has a drug or alcohol problem, (3) the person is nervous. Essential tremor is characterized by a continued shaking of the hands, arms, legs, head and voice that can become quite disabling. For those with ET, the lack of public awareness and ignorance can be devastating. Imagine trying to eat with your hand shaking so badly that the food keeps dropping off the utensil. How does one explain to a whole restaurant full of people that they have ET? How does one get other people eating in the restaurant to stop staring? Without awareness, it is simply not possible. For those with ET, there are no medications that have been developed to help so the need for appropriate medications is vital. Right now, few physicians and researchers are aware of the impact on people diagnosed with ET because they consider the condition benign simply because no one dies. ET is not an end of life story - it is a quality of life story. That is why the IETF is so vitally important. There are up to 10 million people in the U.S. that have ET. The IETF is the only worldwide organization that exists to provide support by providing programs and initiatives developed to address the problems. In addition, the IETF also encourages greater research activities through advocacy and the funding of seed grants that will support greater research initiatives from the National Institutes of Health. The IETF understands the impact ET has on the quality of life and seeks to improve people's lives through support and education. The IETF mission is the people it serves. Every program is designed with that goal in mind. The IETF is committed to improving life for those with ET and eradicating the condition for future generations.

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February 2014)

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February 2014)

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February 2014)

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Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

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People information was last updated by the nonprofit in February 2014

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Programs

Program: ET Community Awareness/Education Seminars (GuideStar Exchange,
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February 2014)

Budget:
$75,000
Category:
Diseases, Disorders & Medical Disciplines, General/Other
Population Served:
Adults
Children and Youth (0 - 19 years)
Children Only (5 - 14 years)

Program Description:

The program provides those affected by ET living in various cities across the U.S., a free two 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 provided free events in 275 cities across the U.S. The program has been selected for funding by the Medtronic Corporation and will be continued through FY14. It is planned to facilitate events in 24 new cities each year.

Program 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 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.

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.

Program Success Examples:

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.

Program: IETF Support Groups (GuideStar Exchange,
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February 2014)

Budget:
$5,000
Category:
Health Care, General/Other
Population Served:
Adults

Program 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 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 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.

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.

Program Success Examples:

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.

Program: IETF Research Program (GuideStar Exchange,
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February 2014)

Budget:
$75,000
Category:
Medical Research, General/Other
Population Served:

Program 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 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 Short-Term Success:

We are currently funding at least two 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.

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.

Program Success Examples:

All of the research has been successful leading to new hypothesis or a discovery that the research leads to a deadend 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

Program: IETF Awareness Campaign (GuideStar Exchange,
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February 2014)

Budget:
$50,000
Category:
Health Care, General/Other
Population Served:
Adults

Program 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 often confuse it for Parkinson's disease. Because the condition can be treated in some 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 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 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

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.

Program Success Examples:

Program success will be determined at the end of March 2011. We don't have anything to report at this time.

Program: ET Information Resource (GuideStar Exchange,
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February 2014)

Budget:
--
Category:
Population Served:

Program Description:

The IETF employes an array of communication platforms to share current, accurate information about ET. There is a website at www.essentialtremor.org; a printed news magazine "Tremor Talk" that is published three times a year, a blog located at TremorTalk.org; a monthly electronic newsletter called TremorGram; a presence on Facebook, Google Plus, and Twitter along with many printed articles about essential tremor. We are very proud of the printed services we continue to provide to our varied age group not forgetting the elderly who so often don't have access to a computer.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
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In FY13, the IETF met its goals and (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 research; (2) educated the public and healthcare providers about the difference between ET and Parkinson's disease; (3) increased the number of support groups in communities throughout the U.S. to help patients cope; (4) provided $83,000 in grant support to neuroscientists to fund important ET research; (5) published two newsmagazines, 3 newsletters and continued the monthly electronic newsletter 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; (6) facilitated 24 community education programs throughout the U.S. to improve quality of life and provide accurate information to those affected by ET; (7) displayed educational materials at ten national healthcare conferences to increase the knowledge of healthcare providers in providing an accurate diagnosis and appropriate treatments for ET. In FY13 we created a nationally broadcast webcast that focused on the history, diagnosis and treatment options for people diagnosed with essential tremor. The website was updated to create greater access to educational materials, and the blog, Tremor Talk.org was created to encourage a greater exchange of ideas and discussion. In the upcoming fiscal year, we will continue to work on ways to increase public awareness, enhance the free education seminars, maintain and develop new support groups, create new educational materials and fund research.
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