Contact the IETF

To reach the IETF, call toll-free 888.387.3667.
Fax 913.341.1296
Mailing Address:
IETF
PO Box 14005
Lenexa, KS 66285-4005
Physical Address:
11111 West 95th Street
Suite 260
Overland Park, KS 66214

15 thoughts on “Contact the IETF

  1. Good afternoon,
    My mother has been diagnosed and dealing with essential tremor for almost 25 years (she is now 80). In addition, she suffers from anxiety issues and has been working with a psychiatrist (and psychopharmacologist) to find an anti-anxiety medication that does not exacerbate her tremor, unfortunately we have had no luck. Would you be able to share either medications we can research or a doctor in the Boynton Beach FL area that specializes in working with ET patients?
    Thank you

  2. I have essential tremor and went thru very successful DBS at the Mayo Clinic in Rochester, MN in 2011. Dr. Kendall Lee was the neurosurgeon that performed the operation. I live in Savannah, GA where I am a member of the ET Support Group at Chandler Hospital. Each month the group meets and we try to get a member to facilitate the meeting. I volunteered for the June 1st meeting. The reason for this email is to find out if the IETF could send me from your library any videos/CDs on ET or the IETF that I could use in the meeting. I would return the videos/CDs soon after the meeting. Thanking you in advance.

    • Not to our knowledge. A good resource for looking at current clinical trials is the website, clinicaltrials.gov.

  3. I am currently 73 and have had ET since college. It was a relatively mild inconvenience until the past 20 years, but has grown steadily worse. Now I have issues with writing, eating & drinking, and a vast myriad of other activities. I am scheduled for DBS surgery in the spring and hoping for a big improvement. In the meanwhile, I want to share some of the dozens of accommodations that keep life palatable for me.
    First and foremost, this is a BENIGN condition! It doesn’t hurt or kill unless you choose to let it! Learn to laugh at yourself. Don’t take offense. If someone seems interested, explain. Be thankful you aren’t dealing with something worse.
    Now, one of my favorite activities is cooking. Can get messy. So, I do my measurement and assembly in the sink, and I drape kitchen towels around work areas. Cleanup is a snap.
    Instead of using a spatula to flip, I cook in lightweight nonstick pans and learned to flip with the pan. (Practice with a slice of dry bread first – it really is fun, and works.) To stir, set pan or bowl in the sink and use a whisk instead of a spoon.
    I usually use footed bowls with pour spouts for sauces, soups, pancakes, etc.
    Some things I just can’t do, so I plan to ask for help. For example, when making jellies and jams, my husband does the final pour into jars and puts on lids.
    This is my first contribution. Let me know if you want more ideas. I am a retired teacher, and taught in spite of my ET getting worse the last 10 years of my career. In fact, it became a teaching tool.

  4. Has anyone had success with physical therapy for improving their tremor, such as the “Big and Loud” PT program which has had success with Parkinson’s disease?

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.