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Mission

Mission. The IETF is a 501(c) 3 non-profit organization whose mission is to:

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Mission

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  1. Mission • The IETF is a 501(c) 3 non-profit organization whose mission is to: Fund research that will find the cause of essential tremor that leads to better treatments and a cure, increase awareness about ET, and to provide educational materials, tools, and support to healthcare providers, the public and those affected by ET.

  2. History • Founded in 1992 by Drs. Harold Klawans and Bill Koller • Initially located and incorporated in Chicago • In 1997 the IETF moved to Kansas with no assets and 3,332 in a proprietary database that could not be accessed • Today the IETF is fully staffed, equipped and serves over 100,000 people from all geographic regions of the world annually

  3. About the IETF • Office is in Overland Park, KS • An organization funded by its donors supplemented by some corporate support • Donations are tax-deductible and the IETF is registered annually in all 50 states to conduct business and fundraise • The IETF is directed by a 5 member Board of Directors and a Medical Advisory Board of 34 • Working relationships have been developed with Google, American Brain Coalition, Cures Acceleration Network, Genetics Alliance, Community Health Charities, Coalition for Clinical Trials, One Mind, National Council of Nonprofits, Midwest Neurological Coalition, Medtronic, CalaHealth, AAN, Applied Policy, GE Healthcare, Insightec, Sage Pharmaceuticals, just to name a few • The IETF has a liaison in Washington DC who is busy monthly increasing awareness among the congressional leaders

  4. Programs • ET Patient Education Events In the last 10 years, the IETF has facilitated 380 free essential tremor patient education events in cities across the U.S. that served over 35,000 people • Support Groups Over the years, the IETF has helped over 300 support group leaders start and maintain support groups across the world. Currently, there are 64 active support groups in 34 states and 5 countries

  5. Programs • Scholarships IETF provides 8-$500 scholarships each year – 4 each in the fall and spring to students of all ages who have a diagnosis of ET Since 2011, the IETF has provided 21 scholarships to deserving students • National Healthcare Conferences Each year, the IETF exhibits at national healthcare conferences increasing awareness about ET and appropriate treatment options In the last 3 years, exhibits were set up at 30 events that included geriatric medicine, internal medicine, family practice, osteopathic medicine, neuroscience nurses, occupational and physical therapy, nurse practitioners, physicians assistants, and neurology

  6. Awareness Month • The IETF along with House Representative Dennis Moore (retired) achieved formal designation for March as National Essential Tremor Awareness Month in December 2010 under H Res 1264. Since then, multiple cities and states throughout the U.S. have officially designated March as National Essential Tremor Awareness Month with walks and awareness activities throughout the month of March.

  7. Social Media • IETF Facebook page www.facebook.com/InternationalEssentialTremorFoundation 7,415 followers w 150 added each month 28% are male and 71% female Awareness page has a total of 3,412 members • IETF Twitter Feed twitter.com/essentialtremor 929 followers Total impressions monthly is 71,152 • IETF Google Plus 58 followers and approximately 18,000 views

  8. Social Media • IETF You Tube Channel The IETF created 6 webinars that cover a variety of topics narrated by members of the medical advisory board The IETF developed a video to help the public and healthcare providers better understand ET and it has been viewed over 94,000 times – more than any other video about essential tremor. To date, the video has been distributed to 1,555 healthcare providers • TremorGram – free monthly e-newsletter distributed to approximately 20,000 people diagnosed with ET

  9. Websites, Mobility and More • TremorTalk.org – blog • Essentialtremor.org IETF website serves the public and people affected by ET by providing webinars, webcasts, educational materials for adults, parents, teachers and children, coping resources, treatment options, awareness month activities, support groups, and information about research The site averages 16,000 sessions each month, 43,000 page views, 78% are new visitors with 22% returning who are 54% male and 46% female with the majority of visitors between the ages of 25-34 (33%) followed by 18-24 (28%), 35-44 (16%), 45-54 (13%), 55-64 (5%), 65+ (5%) • Mobile App Download from the IETF website or go to Google Play or the iTunes App Store and search essential tremor • Tremor Talk 30 page printed donor magazine

  10. Research • The IETF has funded 30 promising ET studies totaling $800,000 and will pass the $1 million mark next year • The IETF is currently reviewing grant proposals to award additional funds July 1 • Last year, the IETF sent out over 10,000 recruitment announcements requested by investigators for ET studies • The IETF website is updated weekly with the latest information on funded research and results of completed research. A link to clinicaltrials.gov. is also provided

  11. Patient Perspectives Essential tremor (ET) is so much more than a tremor ET affects people profoundly – it’s not just a round of golf, mascara on eyelashes, or eating soup or salad ET affects the whole person: Physically Psychologically Socially Emotionally

  12. Patient Perspectives • ET at any severity level has the capacity to affect their livelihood • ET can impede their ordinary activities of daily living, stealing their dignity and independence • ET prevents them from pursuing hobbies and activities that are dear to them • ET often leads them to despair, depression, isolation and humiliation • ET is not benign to them – they live with it all day everyday

  13. Patient Perspectives • In most cases people with ET won’t talk to their physicians or other healthcare providers because they say it would be useless – what more can be done – “we have been forgotten” • They don’t want to be relegated to the bottom of healthcare priorities simply because they don’t have a condition that isn’t considered “significant” or “will end their life” such as Parkinson’s disease, Alzheimer’s or cancer • Then there are healthcare providers and other people who accuse them of being whiney or not appreciative of what good health they do have by saying things like: “man up”, “at least it’s not Parkinson’s”, or “learn to live with it”, or “it’s only a tremor”, and so on …..

  14. Patient Perspectives So after talking to thousands of people over the past 18 years, there is no better way to help you understand their perspective than to have them tell you So I would like to share with you the video that was developed 3 years ago to help healthcare providers and the public better understand all aspects of ET I hope you walk away with a better understanding of the urgency once you see the comments from 6 varied age groups with varied degrees of severity You see, it isn’t what happens here today, it is what happens when you all leave. I ask you to commit to people with ET today and help us fund the research that is necessary to find better treatments and a cure

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