|
|
 |
|
|
Increase size of text: A A A
|
 |
|
|
|
home » links
|
|
Links
The links on this page will take you to additional sources of information, including online pharmacies.
Help Raise Funds for the IETF
 www.amazon.com
For every dollar you spend on purchases at Amazon.com, when you click on the link here, the IETF receives a portion of the money as a charitable contribution.- www.Drugstore.com
Receive special discounts and offers on merchandise each month. As an affiliate, for every dollar you spend, the IETF receives a portion of the money as a charitable contribution.
- www.expressgroup.co.nz
Discount drugstore.
- www.globalrx.com
International pharmacy providing USA approved medications worldwide.
- www.Hertz.com
As an affiliate, for every dollar you spend with Hertz car rental, the IETF receives a portion of the money as a charitable contribution.
Charitable Donation Library on the Net
Raising funds and awareness for ET through charitable contribution sites. Please visit and make a pledge on behalf of yourself, a friend or a family member.
Surgical Procedures
Support Groups
The IETF support group for parents of children with ET has moved its discussion board – to right here on the IETF Web site. Click here to check it out.
Other Neurology Sites
- University of Maryland Medicine
An excellent collection of links to tremor-related informational Web sites.
- www.dana.org
Charles A. Dana Foundation – Dana Alliance for Brain Initiatives
- www.healthlink.mcw.edu
Information in neurological disorders from physicians of the Medical College of Wisconsin.
- www.neurology.jwatch.org
Journal Watch Neurology regularly combs 180 medical journals for important findings in Neurology and is edited and reviewed by more than 80 physicians.
- www.neurologychannel.com
The internet's most comprehensive resource for neurology-related consumer healthcare.
- www.parkinson.org
National Parkinson Foundation, Inc.
- www.sfn.org
Advancing the understanding of the brain and the nervous system by bringing together scientists of diverse backgrounds, by facilitating the integration of research directed at all levels of biological organization, and by encouraging translational research and the application of new scientific knowledge to develop improved disease treatments and cures.
- www.torticollis.org
Excellent information about cervical dystonia, also known as spasmodic torticollis (ST), a relatively rare disorder in which the head twists and turns into abnormal postures as a result of painful, uncontrollable muscular contractions.
- www.wemove.org
The Internet's most comprehensive resource for movement disorder information and the hub of movement disorder activites on the Web.
General Healthcare Information Links
- www.aircharitynetwork.org
Charitable medical air transportation services
- www.alyshia.com/opca
Information on the condition known as OPCA - Olivopontocerebellar Atrophy
- www.bcia.org
For some individuals, stress can temporarily cause an increase in tremor symptoms. Some individuals with tremor have found that biofeedback has helped in the reduction of stress. For a biofeedback specialist near you, visit this site and search by area. It is advisable that you call the office to find out if the biofeedback specialist has experience treating patients with tremor before you schedule your appointment.
- www.care.com
Comprehensive listing of resources for every family member, from elderly parents to children, and even pets.
- www.caregiverslibrary.org
The National Caregivers Library is one of the most extensive online libraries for caregivers that exist today.
- www.cms.hhs.gov
Medicare and Medicaid information
- www.diseasesconditions.com
Directory of all diseases and conditions information
- www.drkoop.com
Empowering consumers to better manage their personal health with comprehensive, trusted information.
- www.drugs.com
A convenient, unbiased and reliable source of drug information. Of particular interest is the drug interaction program, the Pill Identification wizard and image library, as well as drug information listings presented at both professional and consumer levels.
- www.familiesusa.org
Help for caregivers
- www.geneticalliance.org
Genetic Alliance increases the capacity of genetic advocacy groups to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions.
- www.health.gov/nhic/pubs/default.htm
Access to a national health observances annual planning guide, federal health information centers and clearinghouses with Web links and telephone numbers for federal health information and referral services, by topic – plus toll-free numbers for health information, including both federal and nonprofit organization, again by topic.
 www.healthfinder.gov
Your guide to reliable health information provided by the government.- www.hhs.gov
Medical Records Privacy Act
- www.medicalbooks.com
Largest medical, technical and scientific online bookstore. They have more than 90,000 titles of books, multimedia and databases in stock.
- www.medicineresearchcenter.com
Help with reducing the cost of prescription drugs.
- www.nfcacares.org
National Family Caregivers Association
- www.nhgri.nih.gov
National Human Genome Research Institute's Online Genetic Glossary
- www.orthostatictremor.org
One individual diagnosed with orthostatic tremor provides personal experience and information
- www.PatientTravel.org
No-cost, long-distance medical air travel is available from the national Patient Travel Helpline. Phone: 1-800-296-1217.
- www.selfhelpnetwork.wichita.edu
Center for Community Support and Research, Self-Help Network of Kansas
- www.specialneedsfamilyfun.com
Special Needs Family Fun offers family fun and special needs resources to enhance the fun and quality of family life for families with disabilities.
- www.toxtown.nlm.nih.gov
A consumer health website developed by The National Library of Medicine at the National Institutes of Health, this is comprehensive coverage of more than 600 health topics, nightly newswire updates, interactive tutorials with sound and pictures, medical encyclopedia, drug information, directories of health facilities and professionals – and more.
- www.vitamins-nutrition.org
The Vitamins and Nutrition Center provides hundreds of articles on vitamins and nutrition, handy vitamin profiles and information on the latest vitamin and nutrition research breakthroughs.
- www.webmd.com
Disability Information
- www.capperkc.org
Assistive Technology Devices
- www.disabilityresources.org
Disability Resources, Inc. is a national, nonprofit organization, based on Long Island, N.Y., which has provided information about resources for independent living since the inception of its award-winning print newsletter, Disability Resources Monthly, in 1993.
- www.ed.gov/about/offices/list/osers/nidrr/index.html
National Institute on Disability and Rehabilitation Research (NIDRR)
400 Maryland Avenue, SW
Washington, DC 20202-2572
Phone: (202) 205-8134
TTY: (202) 205-9433
(NIDRR) conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment and independent living of disabled individuals of all ages.
- www.naric.com
The National Rehabilitation Information Center
Serving the Nation's Disability Community (NARIC)
1010 Wayne Avenue, Suite 800
Silver Spring, MD 20910
Phone: (800) 346-2742 or (301) 562-2400
TTD: (301) 495-5626
Fax: (301) 562-2401
NARIC is one of the most information-intensive, yet easy-to-use WWW sites of rehabilitation and disability information on the internet. NARIC's literature collection, which also includes commercially published books, journal articles and audiovisuals, averages around 200 new documents per month. They offer listings of events and organizations as well as facts and figures.
- www.ncmedical.com
Functional Solutions - Weighted utensils. Can also be reached at: NCM Consumer Products Division / San Jose, Calif. / 1-800-235-7054
Research Information
- www.clinicaltrials.gov
ClinicalTrials.gov provides patients, family members and members of the public easy and free information on clinical studies for a wide range of diseases and conditions.
- www.ninds.nih.gov
This site provides access to the most recent biomedical research publications concerning human subjects.
|
|
|
 |
|
Research Studies
|
|
»
|
|
Now Recruiting for NIH 1-Octanol Study
The National Institutes of Health (NIH) is in need of 20 volunteers who have ET in their arms to participate in studies of 1-Octanol. Participants need to be otherwise healthy. The study will involve a screening visit and a 4-day hospital admission. NIH will pay for all travel-related expenses. For more information go to http://patientinfo.ninds.nih.gov/Tremor.aspx
Click here for details.
|
 |
|
|
|
»
|
|
Trace R&D Center, University of Wisconsin-Madison
The Trace Center is a research and development center at the University of Wisconsin-Madison. We are looking for individuals who have movement disorders of their arms or hands to participate in a study for evaluating usability of information technology such as hand held computers and public kiosks. You will be asked to visit Trace on two different occasions. You will be compensated at a rate of $15.00/hour and will receive a $50 bonus for completing both sessions. You will also be paid for transportation costs incurred traveling to or from study location (bus fare, car mileage at 33 cents per mile or local taxi service if required). Travel time is included in the hourly rate.
If you are interested and would like to help us in making information technology devices that are more accessible, please contact Carolyn Shaffer.
Call 608-263-1156 or email for details.
|
|
|
|
|
»
|
|
Now Recruiting for Research Study
QUEST Research Institute is enrolling people with moderate to severe essential tremor (ET) for an investigational research study at their metro Detroit site. This is a 2 week study assessing an investigational drug for ET. Interested people with moderate to severe essential tremor, please call 888-QUEST-24 or visit www.questri.com. If you qualify ot participate in this study, you will have to go through study-related procedurs. Compensation for your time and travel will apply.
Call 888-QUEST-24 or click here for details.
|
|
|
|
|
ET Community Events
|
|
»
|
|
Northwestern Memorial Hospital Essential Tremor Symposium
Northwestern Memorial Hospital's Movment Disorders Center invites you a free symposium on Friday, May 23rd from 10 a.m. until noon with presentations by Dr. Aleksandar Videnovic, Dr. Joshua Rosenow, and Caren Jeskey. Location for the event is the Third Floor of 251 East Huron Street, Chicago. For more information, call 312-926-8400.
Call 312-926-8400 for details.
|
|
|
|
|
Support Groups
|
|
»
|
|
May 12 - Baltimore Area ET Support Group
You are invited to the Baltimore, MD Area ET Support Group monthly meeting. We meet the second Monday of each month (with the exception of December) from 6:00 p.m. to 7:00 p.m. Join us for our next meeting on May 12, 2008 at the Parkinson's and Movement Disorders Center of Maryland, 8180 Lark Brown Road, Suite 101, Elkridge, MD 21075. For more information, contact Alle Cyhan at 410-303-7660 or artsyalle@gmail.com.
Call 410-303-7660 or email for details.
|
|
|
|
|
»
|
|
May 14 - Lynchburg ET Support Group
You are invited to the Lynchburg VA ET Support Group meeting on Wednesday, May 14th beginning at 2:00 p.m. Our meeting is held in the Craft Room located in the Main Building of the Summit at Wyndhurst, 1400 Enterprise Drive, Lynchburg. For more information, contact Norma Jean McGhee at 434-525-4160 or email, cmcghee2@verizon.net.
Call 434-525-4160 or email for details.
|
|
|
|
|
»
|
|
May 15 - Munster, IN ET Support Group
You are invited to the Munster, Indiana ET Support Group meeting on Wednesday, May 15th from 6:30 to 8:00 p.m. We will meet at the Community Hospital Fitness Pointe, 9950 Calumet Avenue, Munster, Indian 46321. For more information, contact Donn Davidson, 219-712-7063 or email, donn@computerprofessionals.com.
Call 219-702-7063 or email for details.
|
|
|
|
|
»
|
|
May 15 - Wichita KS ET Support Group
The Wichita, KS Area ET Support Group invites you to our monthly meeting on Thursday, May 15th at 7:00 p.m. Dr. Katherine Widnell, neurologist and Movement Disorders Specialist iw our guest speaker. Please come to the Cafeteria of Wesley Rehabilitation Hospital, 8338 West 13th Street, Wichita 67212. For more information, contact Rita Sevart, 316-796-0769 or sevartr@newmanu.edu; Marvin Daniels, 316-260-7958 or jo.daniels@cox.net; or, Jacque Thompson, 316-722-6693 or thompjb@sbcglobal.net.
Call 316-796-0769 or email for details.
|
|
|
|
|
»
|
|
May 16 - Roanoke VA ET Support Group
The Roanoke, VA Daytime ET Support Group invites you to its monthly meeting held on the third Friday of each month beginning at 10 a.m. We meet in the church parlor of the Grandin Court Baptist Church, 2660 Brambleton Ave. SW, Roanoke. For more information, contact Mike Hopkins, 540-721-2087 or email, mhop856@aol.com.
Call 540-721-2087 or email for details.
|
|
|
|
|
»
|
|
May 17 - San Ramon ET Support Group
You are invited to attend the Essential Tremor Support Group Meeting on the 3rd Saturday of each month in the Blackhawk A & B conference room of the San Ramon Regional Medical Center, 6001 Norris Canyon Road, San Ramon, CA 94583. Park in south parking lot near MRI and enter through the glass doors marked "Birthing Ctr". For more information contact Sharon Alexander, 925-487-5706 or email, galexplor@comcast.net.
Call 925-487-5706 or email for details.
|
|
|
|
|
»
|
|
May 17 - Albuquerque ET Support Group
You are invited to join the Albuquerque NM ET Support Group for its regular monthly meeting held the 3rd Saturday of each month at 10:00 a.m. in the Aspen Room of the The Palo Duro Senior Center, 5221 Palo Duro NE, Albuquerque. The center is located one block north of Comanche, east of San Mateo. For more information contact Winnifred at 505-345-3003.
Call 505-345-3003 or email for details.
|
|
|
|
|
»
|
|
May 17 - Los Angeles Area ET Support Group
The Los Angeles Area Support Group invites you to our next meeting on Saturday, May 17th from 10 a.m. to 12 noon featuring our guest speaker, Dr. Arnulfo Quesad, Research Scientist, Assisant Research Professor of Neurobiology. The meeting will be in Conference Room 3232 in the East Wing 3rd Floor of Building 500 of the VA Hospital, 405 Freeway and Wilshire Blvd. For more information contact Bob, 310-276-6875 or bob@kribs.com; or Alta, 818-700-1876 or alta.rudomin@sbcglobal.net.
Call 310-276-6875 or email for details.
|
|
|
|
|
»
|
|
May 18 - Cincinnati/Dayton ET Support Group
The Cincy/Dayton ET Support Group invites you to hear Tom Rinsky, pharmacist speak on medications prescribed for ET on Sunday, May 18th at 2:00 p.m. We'll meet in Dining Room 2 of Sycamore Hospital on Leiter Road in Miamisburg. For more information contact Norma in Dayton at 937-433-0153, normad@woh.rr.com or Arlene in Cincinnati at 513-791-5546, arlenerosen@gmail.com.
Call 937-433-0153 or email for details.
|
|
|
|
|
»
|
|
May 19 - Lynchburg ET Support Group
You are invited to the Lynchburg VA ET Support Group meeting on Monday, May 19th beginning at 6:30 p.m. Our meeting is held at the Fort Avenue Church of Christ, 1132 Sandusky Drive, Lynchburg. For more information, contact Terry Houck at 434-525-6086 or email, terryhouck@webtv.net.
Call 434-525-6086 or email for details.
|
|
|
|
|
»
|
|
May 22 - Richmond VA ET Support Group Meeting
Please join us for a presentation by Lynn A. Klanchar RN, MS, Associate Director of Education, PADRECC Southeast, McGuire VAMC, on Thursday, May 22nd at 6:30 p.m. at the Tuckhoe Library, 1901 Starling Drive, Richmond 23229. For more information, contact Diana Campbell by phone, 804-553-2345 or email, ET.RichmondVA@yahoo.com.
Call 804-556-2345 or email for details.
|
|
|
|
|
»
|
|
May 22 - Roanoke VA ET Support Group
The Roanoke, VA Evening ET Support Group invites you to its monthly meeting held on the third Thursday of each month beginning at 7 p.m. We meet in the offices of the Roanoke Neurological Associates,4431 Starkey Road, Roanoke. For more information, contact Mike Hopkins, 540-721-2087 or email, mhop856@aol.com.
Call 540-721-2087 or email for details.
|
|
|
|
|
»
|
|
May 22 - Falls Church, VA ET Support Group Meeting
You are invited to attend the next meeting of the NEW Washington DC Area ET Support Group on Thursday, May 22nd beginning at 7 p.m. Our featured speaker is Dr. Fatta Nahab with the NIH, National Institute of Neurological Disorders and Storke. We meet at the Thomas Jefferson Community Library in Falls Church, Virginia. For more information, contact Karen at 703-243-1969 or email, kschroeder06@comcast.net.
Call 703-243-1969 or email for details.
|
|
|
|
|
»
|
|
May 27 - West Suburban ET Support Group Meeting
You are invited to the next meeting of the West Suburban Chicago ET Support Group on Tuesday, May 27th. For more information, contact Doug Ward by phone, 630-790-1342 or email, doruwa2@aol.com.
Call 630-790-1342 or email for details.
|
|
|
|
|
»
|
|
May 31 - Atlanta Area ET Support Group
The Atlanta Area Support Group invites you to its next meeting, Saturday, May 31, 2008 from 10:30 a.m. to 12:00 noon. Please come to the Third Floor Conference Room of the Wesley Woods Health Center, 1841 Clifton Road, Atlanta 30329. For more information, contact Lynn Ross at 404-728-6300 or slross@emory.edu.
Call 404-728-6300 or email for details.
|
|
|
|
|
»
|
|
June 1 - Columbus Ohio Support Group
You are invited to attend the March meeting of the Columbus, Ohio ET Support Group. We will meet Sunday, June 1st beginning at 2 p.m. in the Multipurpose Room of Hilliard United Methodist Church, located on the southwest corner of the intersection of Scioto Darby Road and Main Streey (Hilliard-Rome Road) in Hillard, Ohio. Please enter through the glass door at the rear of the church building on the southeast side; a sign will be posted. For more information, contact Dave Willaimson, 614-921-8711 or email, docwmson@sbcglobal.net.
Call 614-921-8711 or email for details.
|
|
|
|
|
»
|
|
June 3 - Stanford CA ET Support Group
Please join us for the Stanford CA ET Support Group meeting on Tuesday, June 3, 2008 beginning at 6:30 p.m. at Standford Hospital, main floor CRC, conference room # HH141. For more information contact Lois Sumner, 650-328-2998.
Call 650-328-2998 or email for details.
|
|
|
|
|
»
|
|
June 3 – San Gabriel CA ET Support Group
The San Gabriel ET Support Group invites you to attend our monthly meeting on the 1st Tuesday of each month from 6:00 p.m. to 7:00 p.m. We meet in the North/South Conference Room of the Wingate Building of Huntington Memorial Hospital, 100 West California Boulevard, Pasadena 91105. For more information, contact Jennifer Birch, phone 626-535-9552 or email, jennifer@pacifichillsneurosurgery.com.
Call 626-535-9552 or email for details.
|
|
|
|
|
»
|
|
June 4 - Daytona Beach FL ET Support Group
The Daytona Beach Support Group invites you to thier next meeting on Wednesday, June 4th from 3:00 to 4:00 p.m. with a special presentation by Stacy Beyer, Occupational Therapist. We met a the Ormond Beach Public Library, 30 South Beach Street (library phone number, 386-676-4191). Generous free parkig availble behind the library. For more information contact, Lloyd Dunham, 386-761-6509 or email, dunham2@bellsouth.net.
Call 386-761-6509 or email for details.
|
|
|
|
|
»
|
|
June 7 - Saginaw, MI Support Group
You are invited to attend the April meeting of the ET Support Group of Northeastern Michigan on Sat., June 7, 2008 at 10:00 a.m. We will meet in the first floor conference room of St. Mary's Ambulatory Care Center, 4955 Towne Centre, Saginaw, MI 48604. Your family members and friends are welcome to come along. For more information, contact Carol at 989-799-5413.
Call 989-799-5413 or email for details.
|
|
|
|
|
»
|
|
June 10 - NEW Roswell, GA ET Support Group
Please join us at the introductory meeting for the NEW Roswell, GA ET Support Group on Tuesday, June 10, 2008 beginning at 1:30 p.m. We will meet at the Roswell Senior Center, 1250 Roswell Road, Roswell. For more information, contact Wayne at 770-552-2760 or wjdubner@comcast.net.
Call 770-552-2760 or email for details.
|
|
|
|
|
»
|
|
Sept 4 - Asheville NC Area ET Suppot Group
The Asheville Area ET Support Group invites you to their next meeting. We meet the first Thursday of each month from September through May beggining at 6 p.m. in the Seymour Auditorium at Care Partners off Sweeten Creek Road in Asheville, NC. Our next meeting is Sept. 4, 2008. For more information contact Howard Henze, 828-687-2356 or bchhenze@bellsouth.net.
Call 828-687-2356 or email for details.
|
|
|
|
|
|
|
|
|
