Tremor Gram – October 2015
Apply for an IETF Scholarship
Students of all ages who have been diagnosed with essential tremor are encouraged to apply for an IETF College Scholarship. Each semester the IETF provides qualified students with a $500 scholarship to help lessen the burden of attaining higher education. IETF Scholarships may be used to cover the cost of supplies, books, student fees or tuition at a licensed, accredited educational institution or trade school. Application deadline is Oct. 31, 2015, but don’t wait! Learn more and apply today!
Genetic Alliance Launches National Survey
Genetic Alliance, in its role as the National Genetics Education and Consumer Network, has launched a national survey to better understand the healthcare experiences of individuals with genetic conditions, much like essential tremor. There is evidence to show that ET is often genetic. Each child of a parent with ET has a 50% chance of inheriting a gene that causes the condition. This survey explores areas in which families reported barriers, including: 1) identification of the condition; 2) finding services, information, and support; 3) accessing care; 4) telemedicine; 5) adult care; and 6) care beyond the clinician’s office.
To access the survey, please visit:
This survey is an activity of the National Genetics Education and Consumer Network (NGECN), an effort led by Genetic Alliance in partnership with National Coordinating Center for Regional Genetics Collaboratives (NCC), which is led by the American College of Medical Genetics and Genomics (ACMG).
The Washington Report
With 10 other patient advocacy groups, the IETF participated in a Senate briefing in support of legislation that would direct Centers for Medicare & Medicaid Services (CMS) and Centers for Disease Control and Prevention (CDC) to collect patient-centered data on a variety of neurological disorders, including essential tremor.
Specifically, this legislation (S.849) would gather information on socio-demographic, economic, geographic and other factors exhibited by patients. Through this coordinated data collection for neurological diseases, we could move closer to a cure for these conditions. The House of Representatives approved its version of the bill in late July but prospects for final Senate action this year have yet to be determined. To read more about the advocacy efforts in Washington the IETF works on for you, visit www.essentialtremor.org/in-the-news/the-washington-report.
Join the IETF Online Support Group
Did you know the IETF has an international support group that can be accessed through Facebook any time of day or night? Not only does the IETF have a general Facebook page, we also facilitate a Facebook support group called the “Essential Tremor Awareness Group“.
With more than 3,300 members, this “closed” group serves as an active support system offering privacy and interaction for users to share with one another. This online community is a place where people living with ET, like you, and their family members can join together to share common feelings, challenges, and support for one another in a safe and private environment.
Join the group today!