The following reports are from Tom Bruderle, the Washington, D.C. liaison for the International Essential Tremor Foundation. You may find past reports in our 2012 and 2011 Archive.
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 foundation 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 from The White House and NIH.
Hopefully, more will be done after the congress resumes in September.
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 firstname.lastname@example.org.
There was little legislative activity in Congress in May.
I attended a neuroscience research and technology brain mapping presentation on Capitol Hill featuring representatives from several federal agencies and the private sector. The hour-long discussion came shortly after President Obama's call for funding the National Institutes of Health (NIH) Brain Research through Advancing Innovative Neurotechnologies (BRAIN) research.
I followed-up on correspondence IETF Board of Directors member, Shari Finsilver, had with her congressional representative, Rep. Gary Peters (R-MI). I met with his staff to discuss the effects of essential tremor and describe the Deep Brain Stimulation (DBS) procedure Shari underwent.
The “fiscal cliff” issue, which extended the federal government’s borrowing power through May, has impacted much of this session. The sponsors of the House and Senate versions of the National Neurological Diseases Surveillance System Act of 2011 (HR 2595/S 425, respectively) remain uncertain as to when and if the bills will be introduced in the 113th Congress. This uncertainty is not surprising since the Senate bill was introduced in March, 2011, while the House language was dropped in July of that same year.
In the meantime, I have canvassed the House of Representatives and Senate to identify members' legislative assistants specializing in healthcare. This vital but time-consuming effort allows me to target appropriate offices in support of any measure important to the IETF or the membership. I have also joined the email lists of several large law firms that lobby on behalf of a variety of healthcare clients, as their information and analyses may prove useful to the IETF.
- Attended a congressional briefing about the serious consequences of the fiscal sequester on federal medical research.
- Attended a briefing sponsored by the Biotech Industry Organization on the importance of Americans participating in clinical trials.
- Met with Jessica Foley, a science adviser with the Focused Ultrasound Foundation in Charlottesville, Va., to discuss its research efforts pertaining to ET underway at the University of Virginia and elsewhere.
- Will meet soon with representatives of the Alliance for Aging Research to discuss ET, the work of IETF, and ways both organizations might cooperate.