Program:
ET Community Awareness/Education Seminars
- Budget:
-
$80,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
-
Children Only (5 - 14 years)
Program Description:
ET Community Awareness/Education Seminars 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
- Budget:
-
$5,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
Program Description:
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 groupersonal or health counseling.
Program Long-Term Success:
An ET support group is as unique as its membershiand 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
- Budget:
-
$85,000
- Category:
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Medical Research
- Population Served:
-
Adults
Program Description:
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.
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(http://www.essentialtremor.org)
Program:
IETF Awareness Campaign
- Budget:
-
$50,000
- Category:
-
Civil Rights, Social Action & Advocacy
- Population Served:
-
Adults
Program Description:
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 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(http://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
- Budget:
-
$100,000
- Category:
-
Diseases, Disorders & Medical Disciplines
- Population Served:
-
Adults
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Adults
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Adults
Program Description:
ET Information Resource
The IETF employes an array of communication platforms to share current, accurate information about ET. There is a website atwww.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: