A brain disorders battle

THIS WEEK’S 20th anniversary of the American with Disabilities Act illustrates the progress our country has made in advancing accessibility and independence for those who face physical challenges every day. The law protects Americans from being discriminated against because of their physical challenges. Now, we must turn our focus to helping those with brain disorders.

Approximately 100 million Americans have some form of traumatic brain injury, including an increasing number of veterans returning from the wars in Afghanistan and Iraq. Millions more suffer from Alzheimer’s, autism, Parkinson’s, and epilepsy.

Our nation’s economic burden of these brain-related illnesses is more than $1 trillion each year in lost wages, lower workplace productivity, and health care costs, yet less than 5 percent of the National Institutes of Health budget goes to neuroscience.

We lack the coordinated leadership and urgency to fight these diseases that impact too many families. The status quo is simply unacceptable. But we are at a unique moment when we can tap Washington’s political will to come to the aid of veterans with scientific possibilities for medical breakthroughs, and help all Americans suffering from brain disorders.

This effort requires us to bring the same kind of urgency to the fight as we did with AIDS. We must be of one mind when it comes to brain research, and not silo the research among various brain disorders. What this requires is that we get behind the translational research efforts currently underway at the Department of Defense and the Veterans Administration and make the veterans’ cause the cause of all those suffering from a brain-related disorder.

For many the notion of research and science seems distant to their daily lives. But to the family whose parent is losing his or her memory to Alzheimer’s, science becomes very personal.

For the parents of a child with autism, the neuroscientist who helps their child regenerate their neuropathways of cognition is as personal as it comes.

And for the veteran who is paralyzed by a spinal cord injury, the neuroscientist who discovers how to use stem cells to reconnect the veterans brain with the rest of his or her body is their “first responder.’’

For me, as I approach the one-year anniversary of the death of my father, Edward M. Kennedy, as a result of a brain tumor, I mourn his passing but also marvel at the fact that thanks to a neurosurgeon, I was given an extra year with my father beyond what anyone had predicted. To me, that is personal. To me, science is a means to an end — which is to protect the ones we love and to be sure we are doing everything we can to realize medical breakthroughs and cures.

That is the heart of the question. Are we doing enough to make these cures a reality as fast as we can?

As we celebrate the most recent iteration of the civil rights struggle, the 20th anniversary of the Americans with Disabilities Act, it would be appropriate to reflect on the original struggle for civil rights and the national address given by a young president who asked, “Who among us would then be content with the counsels of patience and delay?’’