Have You Registered for the ET Virtual Conference?
Learn and connect with others at the IETF’s Essential Tremor Virtual Education Conference. This free event will take place from 9 a.m. to 1 p.m. (CST) Saturday, October 29 online. You do not need to download or install any software to participate. You only need to have access to the internet.
During the conference:
- Medical professionals and researchers in the field of ET will discuss the diagnostic process and the latest treatments and strategies for living with ET.
- Clinicians and medical companies will showcase some of the latest resources for ET treatment and management.
- Attendees will have the chance to chat and share experiences with fellow patients in virtual meeting rooms.
Register to participate at www.essentialtremor.org/virtualconference.
Deadline Approaching for Spring Scholarships
If you are a college student who has essential tremor (ET), you may qualify for a scholarship from the International Essential Tremor Foundation (IETF).
Each semester the IETF awards four $1,000 scholarships to current or college-bound students diagnosed with ET.
Scholarships are awarded based on academic success, community service, leadership skills and an essay submission. Applications and more details are available on the IETF website.
The deadline for spring scholarship applications is October 31, 2022.
Winners will be notified in December.
Scholarships are made possible by your donations and funds from the Lois and John Lichliter Estate. To date, the IETF has awarded $63,000 in college scholarships.
2022 Research Grant Announced
The IETF has awarded a $75,000 research grant to the study, “Characterizing the Transcriptomic Landscapes of Essential Tremor (ET).” The principal investigator is Dr. Guy Rouleau, OC, OQ, MD, PhD, FRCPC, FRSC, director and neuro chair of the Department of Neurology and Neurosurgery at McGill University in Montreal, Canada.
The study seeks to understand:
1) the role of different cerebellar (brain) cells in ET
2) the effects that genetic risk factors for ET have on the expression of certain genes in the cerebellum
3) the effects of propranolol on cerebellar cells derived from ET patients
The IETF Research Grant Program was established in 2001 to support and encourage studies addressing the etiology and pathogenesis ET. At that time, up to two $25,000 grants were awarded per year. Recent gifts from generous donors allowed the IETF to revamp the grant program for a more meaningful and long-term impact. An investment account has been set up to grow the funds allocated for research so grants can be provided for many years to come.
The IETF now sets the focus of studies on areas where more data is needed. Promising studies have the opportunity to receive up to three years of funding with a potential grant amount of $150,000 for the first year.
To date, the IETF has dedicated more than $975,000 to ET research.
A Conversation with ET Advocate Shakey Nan
She hasn’t known a day without essential tremor, but it took her nearly 50 years to speak out about it. And now that she has, her life has changed.
Nichole Wilton, who calls herself Shakey Nan, has developed a huge following on social media for her weekly conversations and educational videos about essential tremor. She’s demonstrated craft projects, how she paints a room – and her fingernails! She’s cut blocks of cheese and carried glasses and cups – all to show there’s nothing she can’t do, and to encourage others. Her TikTok videos alone have garnered her 600,000 views. She even streamed her wedding last year.
Learn more about her story in our latest Talking Essential Tremor podcast, “A Conversation with ET Advocate Shakey Nan.”
Nichole wants people to see her shake and to ask her about it so she can educate them. Her goal is to educate just one person every single day.
Registration for Webinar
Shakey Nan is amazing! I’ve been following her for a long time. We need more Shakey Nan’s to spread the word about ET.
A person I know who belongs to an organization I belong to has ET, like me, but I’m afraid to approach her about our group. She has hand and head tremors. I have that as well as vocal tremors.
I’ve volunteered to make phone calls for a group and some people comment “whats wrong with you”? I tell them I have vocal tremor.
Thank you, Elissa, for helping to raise awareness. It’s not always an easy conversation because it’s so personal.
Good reply. I too have all the hand, head, and especially vocal tremor issues.Having botox to bolster up larynx after my vocal chords’implant and hope to strengthen my voice which shakes and is soft. I
belong to a local ET group, which is very helpful in that they all have the same problems -with handling tremor socially.etc.Deep Brain Stimulation is MUCH discussed . Someone had Focus Ultrasound done and that she felt was successful.
The general public need to be educated about benign essential tremor.
Rosemary
Propranolol!…very interesting!…Have used it for 46 yrs for migraines (?what affect on liver?). Yes essential tremors become the ‘possible’ next possible. Yes, ☑️ Check that now, I now have such AND now Affib….and problems with sustained sleep?? Really would Love to see some good research findings on such. Many Neuro ‘specialists’ are clueless, aside of the standard ‘proforma’ Rx of anti-seizure meds!! Yes, Yes I am frustrated to learn more, tease out possible multilayers of ‘Essential Tremor’ possible diagnosis. (There has to be layers, multiply possible neurological contributing factors!) I have biochem research background but have branched out to patient care. Feedback for ‘such’ problems, especially those seriously limited by the problem not only intrigues my wondering and frustration to assist other persons trying to come to terms and carry on with Essential Tremor limitations and regain a better, more productive quality of life. Speed on! Share more observations and feed back!
I have had tremors since my teens. began as shaky hands really progressed fast in my 50’s to include head, voice and full body tremors. I had DBS in July of 2021 and now am having all sorts of issues with balance, head, voice and body. Dr Clifford Douglas at Loma Limda in So Cal used Boston scientific for best results, but as soon as it was turned on I started having a strange gate and balance issues. Very frustrating after such a long process to get the surgery which I had hoped to make better some of my symptoms. Sad and depressed now.
Guten Abend !
Ich bin aus Österreich (Austria) Wien, und habe ET gerade entdeckt – Ich bin bis jetzt immer von Parkinson ausgegangen.
Bei mir ist der Tremor im rechten Bein und im rechten Arm, und es könnte natürlich auch ET sein.
Ich habe hier auch den Link zum Webinar gefunden, ich weiß nicht ob ich teilnehmen kann den am 28.Oktober habe ich eine Einstellungsuntersuchung zur TIefen Hirnstimulationts Untersuchung.
Ich werde weiterforschen und mich informieren. Freue mich auch über Antworten.
DANKE und noch eine schöne Zeit
(translated)
Good evening !
I’m from Österreich (Austria) Wien, and just discovered ET – I’ve always assumed Parkinson’s until now.
I have the tremor in my right leg and right arm and of course it could be ET.
I also found the link to the webinar here, I don’t know if I can participate because on October 28th I have a pre-employment examination for the Deep Brain Stimulation examination.
I’ll keep researching and finding out. I also look forward to replies.
THANK YOU and have a nice time