In July, Tom Bruderle, IETF Legislative Liaison, and Catherine Rice, IETF Executive Director participated in the July 22 NIH BRAIN Initiative Webinar designed to engage the patient advocacy community in the research pursuant to President Obama’s commitment earlier this year. There were about 100 people on the call with a second event anticipated sometime in the fall. Currently, NIH is developing specific scientific goals for the Initiative and has a website up and running at http://www.nih.gov/science/brain/index.htm where you can follow the progress.
Not much has occurred this month in the House and Senate. Tom continues to increase awareness and educate our congressional representatives about essential tremor. If you have a congressional representative or senator in DC that you would like for Tom to visit, please send us an email at email@example.com.
From Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation
September excerpt: Through the efforts of the IETF, the number of cosponsors of the National Neurological Diseases Surveillance System Act of 2011 (HR 2595) has climbed to 87, up from 84 last month. Read more…
August excerpt: At Cathy Rice’s request, I contacted members of the Idaho congressional delegation to bring to their attention the Spring-Summer issue of Tremor Talk. The feature story reported efforts by high school students in Boise to engineer better tools to help those with essential tremor improve their communication skills. Read more…
Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation, files his monthly reports about his efforts to increase ET awareness and support for ET-related legislation in Congress.
In his September report, he writes, “Through the efforts of the IETF, the number of cosponsors of the National Neurological Diseases Surveillance System Act of 2011 (HR 2595) has climbed to 87, up from 84 last month.”
This bipartisan bill would require federal agencies funding neurological studies to share their findings. Sharing these findings would further research among neurology studies of different conditions including ET.
To read Bruderlie’s full report for September 2012 and prior months, visit http://www.essentialtremor.org/ET-report-from-washington-dc.
For full language of the legislation, visit http://thomas.loc.gov/cgi-bin/query/z?c112:H.R.2595.IH: