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Educating Congress: Celebrating 45 Years of NICHD Research

Several speakers noted that one result of improved treatments for individuals with ID/DD, including Down syndrome, is that these individuals are living longer than in previous generations.

By Karen Studwell

On May 22, APA and 22 member organizations of the Friends of NICHD Coalition sponsored a congressional briefing to commemorate the 45th anniversary of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). As Chair of the Friends of NICHD, Science Government Relations Office (SGRO) staff member Karen Studwell spearheaded the event with support from Senators Christopher Dodd (D-CT) and Lamar Alexander (R-TN), the Chairman and Ranking Member of the Senate Health Education, Labor and Pensions Subcommittee Children and Families. The briefing was attended by nearly 100 congressional staff and representatives from other advocacy organizations and focused on the latest biomedical and behavioral research in intellectual disabilities and developmental disabilities (ID/DD), which was the area of primary focus when the NICHD was established.

NICHD Director Duane Alexander opened the event with an historical overview of the institute and the advances NICHD-funded scientists have made in identifying the causes of disorders such as autism, Down syndrome, Fragile X syndrome and Rett syndrome - disorders that cumulatively affect nearly six million people in the United States alone. Alexander emphasized that since the institute was founded, there have been dramatic changes in how people with ID/DD are integrated into society as well as the NIH’s research portfolio. The institute has played a prominent role in bringing these individuals “out of the shadows and into the mainstream,” said Alexander.

Jana Monaco spoke next and shared her unique perspective, not as a scientist, but as a parent of two children who have the same rare metabolic disorder. The disorder (Isovaleric Acidemia, or IVA) was not diagnosed until age 3 with her son, who suffered severe neurological impairments without treatment. Her daughter, who was diagnosed at birth several years later, is now a healthy five-year old who benefited from both NICHD’s research advances and newborn screening. Monaco thanked the scientists for their continued diligence and acknowledged that her family is also grateful to Eunice Kennedy Shriver and all the scientists whose work ultimately helps children and families across the country.

The scientific panel included three researchers from the institute’s Eunice Kennedy Shriver Intellectual and Developmental Disabilities Research Centers, a network of 14 Centers across the country that support multidisciplinary research on the causes, diagnosis, and treatment of these disorders. Pat Levitt, Director of the Vanderbilt Kennedy Center for Research on Human Development, focused on the latest genetics findings in autism research, explaining that both genetics and environmental factors are contributing to the observed increased rates of autism. While autism affects one in 150 children overall, the rate of occurrence in boys is considerably higher – one in 90 boys. While recognizing that there are many correlations that garner media attention about the environmental causes of autism, from toxins or vaccines to watching television, Levitt explained that the science is moving rapidly in the area of genetics. Scientists are currently taking new genetic discoveries and developing gene therapies that reverse clinical symptoms in animal models, such as cognitive impairment in mice models with Rett syndrome.

Steve Warren, Director of the Kansas Intellectual and Developmental Disabilities Research Center and President of APA’s Division on Intellectual and Developmental Disabilities, explained that to understand problems that occur in development, we must appreciate the normal developmental process, which is also driven by both heredity and the environment. As a psychologist developing science-based “early interventions,” Warren explained that early interventions include focused efforts to enhance child development and family functioning during the first three years of life. These interventions may involve as little as providing general information to the family and as much as diet modifications, surgery, parent training and intensive behavioral interventions.

Several speakers noted that one result of improved treatments for individuals with ID/DD, including Down syndrome, is that these individuals are living longer than in previous generations. Marsha Mailick Seltzer, Director of the Waisman Center at the University of Wisconsin-Madison, spoke about the long-term impact of these disorders on the family as parents adjust to a lifetime of care giving for their children as they grow into adulthood. By studying the family, Seltzer has found that not only does caring for a family member with autism increase the stress on the family, but that the family environment can also affect the symptoms of people with autism. Interventions targeted at the family can have a profound impact on the health of both the caregivers and their children.

Copies of the presentations can be accessed from APA's SPIN publication [now APA Science Policy News].