From her perch as director of the Waisman Center, and with an insider’s knowledge of its work to advance our understanding of developmental disability and the people it affects, Marsha Mailick sees a hopeful microcosm of the best attributes of the University of Wisconsin-Madison.
Although its roots are deeper, going back to its earliest iteration as the Joseph P. Kennedy, Jr. Memorial Laboratories in the early 1960s, the Waisman Center this year celebrates 40 years of research, teaching and outreach in the interest of developmental disabilities. Exploring the range of disabilities, the Waisman Center community has helped gather new knowledge on the basic biology, developmental course, prevention, treatment and social context of a highly complex set of human conditions.
This is no small thing. Developmental disability, which can be cognitive or physical, is estimated by the Centers for Disease Control to affect as many as 1 in 6 children under the age of 17 in the United States. Such conditions run the gamut from autism and Down syndrome to the kinds of intellectual deficits once referred to as mental retardation. Generally, such conditions are expected to last a lifetime.
“Developmental disability and our understanding of its causes is one of the great research quests of our day,” explains Mailick. “We know we have had an impact on the health and quality of life of many thousands of people over the course of our existence. Our hope and intent is to continue that tradition, helping children and adults with developmental disabilities and their families live full, healthy and meaningful lives and to seek new knowledge about the causes, consequences, and treatments for these conditions.”
Those helped by the Waisman Center, such as Claire Bible, who has a mild form of Down syndrome (mosaic), knows the difference that the center’s work can make. She recently donated a skin sample to be used in research by Waisman scientist Anita Bhattacharyya, to develop a Down syndrome induced pluripotent stem cell line.
“There are many ‘what ifs’ in the world,” Bible says. “I wondered how did I come into the world with mosaic Down syndrome? I began thinking about the role of environment and genetics. I hoped that by donating a skin sample, I could help answer some of the ‘what ifs’ about mosaic Down syndrome for future generations.
The center is named after Harry Waisman, the pioneering Wisconsin pediatrician and biochemist whose work helped inform our understanding of Phenylketonuria or PKU, an inherited form of mental retardation, and its prevention. Like Waisman’s early work, the basic science conducted at the center has helped identify key risk factors for developmental disability as well as treatments, and has also shed light about the genetic and environmental causes that give rise to such conditions.
Waisman’s scientific passion and advocacy for those with developmental disorders, notes Mailick, is the archetype for what has become one of the world’s leading centers of research, education and outreach on developmental disabilities and neurodegenerative diseases.
Forty-plus years of discovery, education and patient outreach are impossible to catalog in any simple account of the center. For a summary of the center’s 10 signature accomplishments, visit: http://www.news.wisc.edu/21439.