If you or a loved one is living with life-interfering essential tremor (ET), you probably know about the Essential Tremor Foundation (IETF). As an organization dedicated to those affected by this common movement disorder, it is the global leader. This year it will celebrate 30 years of progress in its mission since it was founded in 1988.
Its mission has three primary aspects:
- Fund research into the cause, treatments and cure
- Raise awareness about ET
- Develop and provide educational materials, tools and support (aimed at healthcare professionals, patients/loved ones, and the general public)
The art of fundraising
If you have ever organized or participated in a fundraising campaign, you know the challenges involved in asking constituents to hand over money. Whether it’s a charity auction, a raffle for a worthy cause, holding a school bake sale, or helping with a foundation mass mailing, you know you’re competing with a host of other worthy causes that are hoping for their share of the donation pie.
Among other things, you may be asked what the money will be used for, so it helps if the organization has prepared you with information on past accomplishments and the current plan.
Here’s a current example of how the IETF puts contributors’ money to great use. On January 9, 2018 the organization put out a request for research proposals for which funding will be awarded. Now, every medical and scientific research program is always in need of funds to cover the costs of research (administration, staff, equipment, supplies, etc.). Just as fundraisers are competing for constituents’ dollars, researchers are constantly competing against each other for grant awards.
The IETF’s request covers the broadest possible ET research terrain. Proposals will come in that cover all categories: nosology (classifications of ET, which we now know is a family of conditions), etiology (cause or origin of ET, which remains a mystery), pathogenesis (how ET develops or progresses in the body), treatment, and “other topics relevant to essential tremor.”1
The money that will be granted is intended to cover a project with a maximum 1-year initial scope, and the grant award will not exceed $25,000. The IET specifies, “The aim of this grant 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 and/or other sources if sufficient preliminary information can be obtained from projects supported by the IETF.” The key word is “stimulate” as in plant a seed to encourage continued or future work along the lines of the project that receives a grant award. Personally, I’m glad I’m not a member of the panel that will judge which of the proposals will be most worthy, since I have a hunch that each of them will have something very important to contribute to the science, medicine, and treatment of ET.
So, in terms of distributing money that the IETF has raised, it should hearten donors (or potential donors) to know that there is a brand new initiative with awards to be announced on July 1, 2018 – when funding will begin.
As for past financial accomplishments, the IETF can proudly declare that their organization has provided “… more than $750,000 in research grants in the search for the cause of ET. The Foundation has hosted numerous community awareness events across the U.S. to provide those affected with the basic knowledge necessary to become their own advocate when seeking treatment. And, the IETF also provides assistance to a vast network of support groups around the world.”
IETF Information about MRgFUS for ET
The IETF produces a Tremor Gram news bulletin, and in August 2016 they announced that the FDA had approved MRI-guided Focused Ultrasound (MRgFUS) for the treatment of ET, making it available in the U.S. In addition, The IETF website includes a webpage on treatment options for ET that does not respond to medication (or patients do not wish to use it). The section on MRgFUS includes a link to the patient website provided by the manufacturer of the Neuravive procedure that we offer at our Center, the Sperling Neurosurgery Associates.
None of this would have been possible without an extensive history of research that led up to this breakthrough noninvasive treatment for ET. Those who give financial support to the IETF’s fundraising for research can be confident that their money is going to a very important and worthy enterprise. They are part ongoing teamwork to solve the ET riddle, and hopefully one day prevent it once and for all.