« April 2008 | Main

Refractory Epilepsy Seminar in New York City

The New York University Comprehensive Epilepsy foundation FACES (Finding A Cure For Epilepsy) has announced that registration is now open for the final Evening Lecture which will be held on Monday, June 16, 2008.

Dr. Lara Marcuse will speak on the topic of "Refractory Epilepsy”.  REGISTER by clicking here.

A webcast is now available for the FACES April 28th Evening Lecture "Side Effects of Anti Epileptic Drugs" presented by Dr. Jacqueline French.  Click here to view this lecture.

Brain Injury Legislative Update

The following is the Legislative Update supplied by the Brain Injury Association of America for this week:

Dear Advocates:

Two weeks remain until Congress leaves for Memorial Day recess, and legislative activity is expected to center on efforts to pass a war supplemental spending bill as well as potentially achieving progress on a fiscal 2009 budget conference report.

Several events and developments related to traumatic brain injury took place this week in our nation’s capital.

On Tuesday, the House Ways and Means Subcommittee on Health held a hearing on the issue of competitive bidding of durable medical equipment under the Medicare Fee-For-Service program.  As a member of the Consortium for Citizens with Disabilities (CCD), BIAA signed on to several letters urging Congress to ensure that the Medicare competitive bidding program does not decrease access to and the quality of assistive devices.

Also this week, Democrats included legislation which would place a moratorium until March 2009 on several harmful Medicaid regulations (H.R. 5613), in the FY 2008 war supplemental appropriations bill.  BIAA continues to strongly endorse H.R. 5613 and supports efforts to keep the bill in the war supplemental legislation as it moves towards final passage, expected within the next two weeks.
In addition, BIAA Government Affairs Associate Robert Demichelis attended “Brain Pacemakers:  A Promising Approach and a New Era of Hope for Neurological and Psychiatric Disorders,” a symposium on deep brain stimulation sponsored by The Office on Disability, U.S. Department of Health and Human Services and the Cleveland Clinic Center for Neurological Restoration.

As a final note, BIAA continues to wait to see if Congress will be able to agree on a budget this year before sending out its Legislative Action Alert on FY 2009 TBI Appropriations.  In the meantime, BIAA has signed on to a coalition letter urging Appropriations Committee Chairs in both chambers to allocate an additional $15 billion over last year’s funding levels for the Labor-HHS-Education Subcommittees.

Epilepsy Summer Camp Scholarships

FACES (Finding a Cure For Epilepsy), sponsored by the NYU Compehensive Epilepsy Department, is once again offering children affected by epilepsy the opportunity to enjoy a wonderful summer camp experience.

Families with a demonstrated financial need can visit the Faces website and apply for a select number of scholarships towards tuition at camps around the country. The list of approved summer camps can be found on the Summer Camps page of the FACES website . You can complete the summer camp scholarship application that can be found on this page and submit it to the faces office.

All applications must be received by June 1, 2008 for consideration.  If you have any questions, you can send an e-mail

Traumatic Brain Injury TBI in Iraq War Veterans Explored by MIT's Technology Review Magazine

Traumatic brain injury, or TBI, has been labeled the signature injury of the Iraq War. Estimates of the number of soldiers who have experienced concussions while deployed range as high as 20 percent. The long-term implications of TBI are unclear, and no treatments exist to cure long-lasting symptoms.

The cover story of the May issue of MIT's Technology Review magazine explores the symptoms of TBI in Iraq veterans through first-person interviews, and it examines new technology being developed to better explain the changes that occur in the brain from explosive shock waves.

The article entitled  "Brain Trauma in Iraq," looks at new methods to study the effects of TBI.

Accompanying the cover story online is a documentary-style video that includes interviews with all three research scientists, as well as soldiers suffering from TBI. They can be found by clicking here.   

Brain Injury In the Elderly

Of the 1.4 million Americans who receive a traumatic brain injury each year, the hospitalization and death rate is highest for individuals over the age of 75 with injuries stemming primarily from falls and automobile accidents, according to the National Center for Health Statistics.

On May 14-16, renowned brain experts will gather at Moody Gardens in Galveston, Texas to discuss ways to treat and rehabilitate elderly men and women with traumatic brain injuries.

The Galveston Brain Injury Conference is an invitational event sponsored by the Center for Rehabilitation Sciences and the School of Allied Health Sciences at the University of Texas Medical Branch in collaboration with the Transitional Learning Center at Galveston which provides rehabilitation for those who have suffered an acute brain injury

Frustrations of a Brain Injury Survivor

Victims of brain trauma face constant frustration with the accommodations that are made available to them. Frustration abounds because assistance for brain injured individuals is not supplying a wheel chair, crutches or other means of physical assistance.

Dan Windheim, a brain injury survivor has written a poem describing the frustration that he has faced in the many years since suffering a traumatic brain injury.  It is a forceful message for all to read:

IS THE ADA FOR ME?  by Dan Windheim

It works for many, but not me.
Anger, frustration,disillusionment, more anger
Misunderstanding? My understanding-
Assist me in attaining employment; level the playing field so to speak.
A reasonable accommodation they say; but who is they, and can I be accommodated?
A ramp, an elevator, an accessible bathroom, helpful to many;
but not me.
Disinhibition, short term memory loss, poor reasoning skills.
Burden to many; to me too.
A long 20 years; many opportunities, many interviews, many rejections.
Misunderstood,cheated, misjudged,; a firestorm of emotion
Searched here, searched there, just searching. Only searching.
A void in my life; an emptiness, a nothingness (a feeling not a word)
Where do I go, what do I do? Does anyone have the answer;
is there an answer?
So I continue to move, go on with my life; talking and writing,
and waiting.

New Developments in Sports-Related Concussion Conference

The University  of South Florida, College of Medicine has just announced their program for a sports-concussion conference entitled "New Developments in Sports-Related Concussion Conference" scheduled for July 24-25, 2008 at The Sheraton Station Square, Pittsburgh, Pennsylvania.

New knowledge on sport-related concussions has developed in recent years and athletic trainers and medical professional have had to rethink how they manage sport-related concussion. This conference features internationally recognized experts in concussion management and will focus specifically on new and innovative strategies for the evaluation and treatment of sports-related concussion. 

The conference planners list the following objectives for conference participants:

- Classify biomechanical, neurometabolic and neurobehavioral aspects of concussion.
- Explain appropriate on-field concussion diagnostic and return-to-play protocols.
- Compare and contrast new brain imaging diagnostic techniques for the management of concussion.
- Analyze the role of the computerized neuropsychological testing in making return-to-play decisions.
- Assess current treatment options for sports-related concussion and post-concussion syndrome.
- Implement a concussion management program at the professional, college or high school level.

Concussion conference registration information is available by clicking here.

Army Vets Not Receiving Adequate Care According to Audit of Veteran's Affairs

The Associated Press reports that a report of the VA's inspector general found that many Iraq war veterans with traumatic brain injury are not getting adequate health care and job assistance for their long-term recovery despite years of government pledges to do so.

The VA Inspector General reports that "Significant needs remain unmet," In one out of four patients, the the study reports that those suffering from traumatic brain damage were not receivign needed help for health care, vocational rehabilitation, family support or housing. Some  patients specifically cited trouble in getting primary or specialty eye care, while others reported gaps with family counseling for problems such as depression and anger.

"We continue to be concerned that all veterans discharged after inpatient rehabilitation for TBI receive case management, unless this has been explicitly denied by the patient," investigators stated, adding that they will continue monitoring the VA to ensure Iraq war veterans are receiving the care they need.

The failure to provide these brain injured veterans with necessary services is a national disgrace!  It is hard to believe that even after all of this publicity and all of the promises by the VA,  these veterans are still being deprived of necessary services.

Brain Injury Association of America: Legislative Update

The Brain Injury Association of America has requested that I post the following summary of this week's legislative activity. 

This week marked a major legislative victory for the brain injury community, as President Bush officially signed into law legislation reauthorizing the TBI Act (S. 793) on Monday, April 28!  Congratulations to all BIAA state affiliates, advocates, and national stakeholders who helped make TBI Act reauthorization a reality.  To view a copy of BIAA’s official press release applauding this major accomplishment, please visit the brain injury association of america web site.

In other exciting news, BIAA proudly endorsed The Caring for Wounded Warriors Act of 2008 (S. 2921), legislation introduced on Monday, April 28 by Senator Hillary Rodham Clinton which would increase support for family caregivers of servicemembers with TBI.  Several recommendations made by BIAA during the legislative drafting process were incorporated into the bill.  A copy of BIAA’s Letter of Endorsement for S. 2921 will be available shortly on the brain injury association web site.

Also this week, a report was released by the Department of Veterans Affairs Inspector General which found that the VA is not providing the necessary standard of support and long-term follow-up assistance needed by veterans with TBI and their families.

In addition, after the House of Representatives passed by a veto-proof margin last week important legislation which would place a moratorium until March 2009 on several harmful Medicaid regulations (H.R. 5613), the fate of the bill was left up to the Senate.  Earlier this week, Senate Majority Leader Harry Reid (D-NV) attempted to bring the bill up on the Unanimous Consent Calendar, but this attempt was blocked by Senator Coburn (R-OK).  Now there is an effort to get the bill included in the FY 2008 Supplemental Appropriations bill.  BIAA continues to strongly endorse H.R. 5613 and supports efforts to include the bill in the FY 2008 Supplemental Appropriations bill.

As a final note, BIAA is waiting to see if Congress will be able to establish a budget this year before sending out its Legislative Action Alert on FY 2009 TBI Appropriations.  There is speculation that Congress may indeed be able to achieve a budget agreement in the upcoming next few weeks, and BIAA’s Appropriations Action Alert will be sent out shortly thereafter.