“All hands on deck” for BRAIN Initiative

BRAIN-InitiativeDescribed as America’s next moonshot, the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) Initiative is an NIH 12-year scientific plan focused on revolutionizing our understanding of the human brain. The IETF has joined major foundations, patient advocacy organizations, universities, and corporations, to align more than $240 million in research efforts to the initiative.

Since President Obama announced the Initiative in 2013, dozens of leading technology firms, academic institutions, scientists and other key contributors have made significant commitments to advancing brain research to better understand disorders such as Essential Tremor, Alzheimer’s and Parkinson’s diseases and more. Approximately $46 million in federal grants will support the research projects of over 100 investigators in 15 states and three countries. Stay up to date and spread the word on the BRAIN Initiative to uncover the mysteries of brain disorders.

Raise Your Voice For Change

Congressional-Neuroscience-TremorTalkfor-webUnlock the mysteries of the brain and advocate for research through the Congressional Neuroscience Caucus. It is only through research that the causes, cure and ultimately prevention of neurological disorders, like ET, will be found.

What the Neuroscience Caucus does:

  • Sponsors briefings on research and findings
  • Collaborates with research organizations to build awareness
  • Distributes congressional information
  • Promotes legislation to advance neuroscience research

What YOU can do:
Reach out to your U.S. Representative and ask them to support the Neuroscience Caucus today. Find your Representative at: www.house.gov/representatives.

Together, our voice is powerful and together, we can drive change.

August DC Report

 

Washington_DC_-_US_Capitol

Congress adjourned for its summer recess on August 5 and will return on September 9.  As in months past, congressional attention has largely been directed toward repeal, or at least major modification, of the Affordable Care Act. Therefore, it difficult to address other issues right now.

However, the IETF and Tom continue to speak to congressional representatives two or three times a month on research and other issues pertaining to the IETF and essential tremor.  We will continue to follow the programs and plans that result from the call for action on brain research by President Obama.

President Obama launched the BRAIN Initiative in April. The initiative is a research effort to revolutionize our understanding of the human mind and uncover new ways to treat, prevent and cure brain disorders. The Initiative promises to accelerate the invention of new technologies that will help researchers produce real-time pictures of complex neural circuits and visualize the rapid-fire interactions of cells that occur at the speed of thought.

Find more information on the BRAIN Initiative on the IETF’s website.

Hopefully, more will be done after the congress resumes in September.

Find past IETF DC reports here.

July DC Report

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 info@essentialtremor.org.

 

August-September ET Report from Washington, DC

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…

September 2012 ET Report From Washington DC

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: