The May 2008 Launch of CDSC

May 12, 2008

The launch of the Congressional Down Syndrome Caucus last week was a big success! The co-chairs are Rep. Pete Sessions (TX-32), Rep. Patrick Kennedy (RI-01), Delegate Eleanor Holmes Norton (DC-AL) and myself. I recorded a video statement regarding the Caucus and its goals that I sent to you just before Mother’s Day. If you haven’t seen it yet, click here.

Eddie Barbanell, who has Down syndrome and starred in the movie The Ringer, shared a rap that was remarkable! He reminded us that people with Down syndrome are dedicated, hardworking and valuable. He encouraged us to emphasize potential and acceptance. People with Down syndrome, he said, belong in the mainstream—the mainstream of life. They have the same needs as anyone—respect, love and camaraderie. He challenged Senators Obama, Clinton and McCain to join his campaign!

Stanford researcher Dr. Bill Mobley gave a PowerPoint presentation on his research about Down Syndrome. The brain is a function of neuronal circuits. With Down syndrome, not all circuits work well. It’s not that these neurons do not exist; it’s just that they do not work well. There’s an imbalance in excitation and inhibition circuits. The inhibition, the calming down circuit, is too strong thus limiting learning and memory. He challenged us to approach Down syndrome research as a special, biologically unique opportunity as breakthroughs in Down syndrome will explain the cause of the same diseases in people who do not have Down syndrome. “We’re not just asking what our country can do for people with Down syndrome; we’re asking what studies of people with Down syndrome can do for our country and the world.”

We also heard from the National Institutes of Health regarding its 10 year research plan for Down syndrome. (Click here for that release.) I’m especially encouraged to see the coordination and emphasis on cross disciplinary institutes — National Heart, Lung, and Blood Institute supporting studies of the genes that contribute to heart malformations (it’s interesting to note there is no documented case of a person with Down syndrome having a heart attack) and sleep apnea; National Cancer Institute investigating various types of leukemia; National Institute of Aging targeting ways to treat Alzheimer’s; National Institute of Allergy and Infectious Diseases involved in immune response; National Institute of Mental Health focusing on treatment for mental disorders including autism, obsessive-compulsive disorder, depression, and psychosis; and the National Institute of Neurological Disorders and Stroke (NINDS) looking at how the brain is developed and affected). Congress requested this plan in 2007. I want to get more information.

It was exciting to see the politicians, researchers, and Down syndrome community coming together to coordinate and advance our shared goals.