Research Brings Hope for a Brighter Tomorrow, and World Without Essential Tremor

We sometimes take for granted the vast history of medical research and its impact on human ailments and diseases. Most people have heard of polio and tuberculosis, which today are easily preventable with a vaccine. Organ transplants extend life for many and the pacemaker regulates the heart’s rhythm for people with irregular heartbeats. Physicians can remove cataracts and cancerous tumors, and use artificial insemination to help couples conceive.  And surgical options for essential tremor (ET), including focused ultrasound and deep brain stimulation, have enhanced the quality of life for thousands. None of these would be possible without medical research.

The International Essential Tremor Foundation (IETF) knows through continued medical research, there will one day be improved treatments and possibly a cure for essential tremor. So each year, we continue to fund research projects to address the nosology, etiology, pathogenesis and other topics relevant to essential tremor. Through promoting and awarding research grants, we also know we can stimulate inquiry into essential tremor (ET) by leading scientists.

IETF Research Appeal Graphic 2019

July is a time when we focus on essential tremor research and work to raise money for research grants. Since 2001, the IETF has dedicated more than $800,000 toward essential tremor research and we are not done yet.

This year, we presented a $25,000 research grant to Dr. Adrian Handforth with The Veterans Affairs Greater Los Angeles Healthcare System. His research project is titled, Evaluation of an a6ßy2 GABA Receptor-Specific Drug as Potential Therapy. It will explore the potential of developing a drug that mimics how low doses of alcohol can suppress the effects of tremor, but with more selectivity of molecular targets to try to avoid adverse effects found with other medications used for management of essential tremor.

Please consider supporting our “Shine a Light on Essential Tremor Research Campaign” this month. Watch for a special letter in your mailbox outlining how you can help. Or go online and make a donation.

Research provides hope for all of us, and means a better and brighter future for the next generation. Perhaps our scholarship recipient, Deirdre, summarized it best when she said:

New and ongoing research for ET gives hope to us young people. Even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.”

Research for Essential Tremor Gives Hope to Young People

By Deirdre Maciak
IETF Scholarship Recipient

I was only 16 years old when I was diagnosed with essential tremor. Up until that point, I don’t think I ever really registered how young I was. I had started driving, going out with my friends without supervision, and doing all the things that are expected of teenagers finding their way in the world. It’s an incredibly careless time in one’s life—there is so much ahead of you that the lines between the past, present and future are blurred.

Photo of Deirdre Maciak, IETF Scholarship WinnerMy main goals were always so clear to me. I wanted to get through high school consistently getting better at playing saxophone, study harder and get better grades, get into nursing school, and come out at the end with my dream job. But, being told that you have a chronic condition, one that won’t go away and will probably only progress over time, will bring even a busy-minded teenager to a halt.

Suddenly I had to reevaluate everything that I wanted in life. My diaphragm was spasming too much to have a good control on my air supply while playing saxophone. My physics class only had stools, and because there was no support, I spent more time trying to control my shaking core than paying attention to the teacher. I had a lot of questions. How am I going to be steady enough to draw blood when I’m a nurse? And, why did this have to happen to me, a 16-year-old girl, before I could achieve any of my dreams?

I’m not the first or last teenager out there whose plans have been derailed in some Quote from Deirdre Maciak about the importance of ET researchcapacity due to essential tremor. But, I am part of a generation of people with the condition who have better access to experimental treatments due to research and new discoveries.

Working with my neurologist, I’ve tried one medicine so far, but the side effects were difficult, so I’m exploring other options and I expect to need some of the new innovations in my lifetime for sure. Knowing that there are options out there to help control the frustrating symptoms has helped me put everything in better perspective.

Today, I follow what’s happening with ET by reading the International Essential Tremor Foundation (IETF) website, and watch what hospitals in my area, such as Brigham and Women’s, are doing with focused ultrasound. I was also excited to learn that a family friend, who is a research scientist, recently starting working for a company that is hoping to release a new drug that would be a big step in helping people with neurological disorders including ET. They hope to know this fall if they receive their next approval – and I am optimistic that it can help me and people of all ages who are dealing with this condition.

I was accepted into nursing school and start this fall! So despite this condition, and maybe also partly because of it, I’ll give it my all with the hope of helping people in general, and possibly those who suffer specifically from lifelong conditions as I do.

I still have a lot of questions. But, the new and ongoing research for ET gives hope to us young people, that even though our conditions may worsen over time, there are also so many ways that modern medicine can help us live our lives normally and we all need to work toward that goal together.

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July is a time with the IETF draws awareness to its many research initiatives: funding research grants, advocating for more research on essential tremor,  recruiting for research studies, and more. Your generosity is the reason the IETF is able to carry out these initiatives and work toward improving the quality of life for every generation living with essential tremor. Help us keep hope alive. Donate today.