Tremor Gram – February 2018
Connect With a Support Group Near You
Did you know the IETF has more than 61 support groups worldwide? Support groups bring people with essential tremor together in a caring environment to share stories, learn about management techniques and connect as a small ET community. This past year, eight new support groups were formed in the following areas:
- Monument, Colorado
- Madrid, Spain
- New Holland, PA
- San Antonio, TX
- Kpedzie Awlime, Ghana
- White Salmon, WA
- Brisbane, Australia
- Jacksonville, FL
IETF Support Groups are listed on our website. If you don’t see one near you, think about starting one! You can apply online and IETF will provide you with training materials and support.
If you are on Facebook, consider joining the Essential Tremor Awareness Group, an online support group where members post questions, concerns, share tips and become an online support system for others with ET. To join the group, make a request here.
Tremor Talk Blog is Back
The IETF’s blog, Tremor Talk, has been reignited. From scholarship winners to research news, the blog is a way to keep the conversation going about essential tremor.
In our latest blog, IETF Executive Director Patrick McCartney talks about new opportunities coming this year.
Watch for guest bloggers in the coming months, including several during National Essential Tremor Awareness Month in March.
Access current and past blog posts through the home page of our website, or click here. You can subscribe to the blog as well. We hope you will share the blog posts on your social media pages to help increase awareness for ET and the IETF.
Clinical Trials in Need of Participants
IETF is proud to have designated more than $60,000 toward essential tremor research during 2017. Each year, a portion of our fund raising dollars is dedicated to grants to fund research studies. Research helps scientists gain a better understanding of what causes ET, which can lead to better treatment options for all levels of ET.
These studies are not possible without the participation of people with ET. Two pharmaceutical companies that the IETF works with to share clinical trial opportunities, Cavion and Cala Health, recently shared insight about the process.
“At Cavion, we have a very patient-centric approach. Their safety always comes first, and we fully appreciate the importance of the study participants’ voice in the process. We design our trials to capture how participants respond to experimental treatments, even using wearable technology to measure tremor, rather than simply relying on clinical observation,” said Chief Medical Officer, Spyros Papapetropoulos MD, PhD. “We are deeply grateful to people with essential tremor who dedicate their time to participating in research that helps the community develop safe and effective drugs for all patients.”
“Cala Health is merging advancements in neuroscience and electronics to design a new treatment for patients with essential tremor,” said Paula Chidester, clinical program manager, Cala Health. “When we receive feedback across participants from all age ranges and different tremor severity levels, we really benefit and know that patients one day will benefit, too.”
Watch the IETF website and social media to learn about current research studies recruiting participants.
Counting Down to NETA Month
March is your time to speak out! In December 2010, Congress passed a resolution designating March as National Essential Tremor Awareness Month. It’s a time to educate people about what essential tremor is and its impact on millions of lives.
At the IETF, we will be carrying out our annual NETA Month campaign, complete with posters, web banners, t-shirts and other materials. Watch our website and your email for more details!