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(American Association of University Affiliated Programs for Persons with Developmental Disabilities logo)
American Association of University Affiliated Programs for Persons with Developmental Disabilities

Gerald Golden, M.D.
President

Robert Stempfel, M.D.
President-Elect

Terrence R. Dolan, Ph.D.
Past President

Stephen Schroeder, Ph.D.
Secertary

Carl F. Calkins, Ph.D.
Treasurer

Gary W.Goldstein, M.D.
Member at Large

Clydie K. Mitchell, M.Ed.
Member at Large

David O'Hara, Ph.D.
Member at Large

Vicki Pappas, Ph.D.
Member at Large

Cecilia Rokusek, Ed.D., R.D.
Member at Large

Richard L. Schiefelbusch, Ph.D.
Member at Large

Deborah Spitalnik, Ph.D.
Member at Large

Colinda Stoneman, Ph.D.
Member at Large

William E. Jones, Ph.D.
Executive Director

FAX TRANSMISSION SHEET

TO: (handwritten) Mo West/Fax #: 224-8952

FROM: (handwritten) Al Guida

DATE: (handwritten) June 7, 1990

NUMBER OF PAGES (Including cover sheet): (handwritten) 3

MESSAGE: (handwritten) Mo- Attached please find the letter we discussed this morning. Have a good weekend!!!

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June, 1990

The Honorable Tom Harkin
Chairman
Labor, Health and Human Services,
Education and Related Agencies,
Appropriation Subcommittee
SD-186 Dirksen Dirksen Senate Office Bldg.
Washington, D.C. 20510

Dear Tom:

I am writing you concerning the fiscal situation of both the Kansas Center for Mental Retardation and Human Development at Kansas University (KU) and the Eunice Kennedy Shriver Center for Mental Retardation affiliated with the Fernald State in Waltham, Mass. These two Mental Retardation Research Centers (MRRCs) currently receive core administrative support through the National Institute of Child Health and Development (NICHD). Given your outstanding record of leadership on behalf of persons with mental retardation and other developmental disabilities, I feel confident we can count on your support.

I was recently informed that the Shriver Center and KU submitted applications to the Institute in this fiscal year, which fell into the "approved, but unfunded" category; these applications were required as part of a broader national competition initiated by NICHD some years ago. Consequently, if they do not compete successfully in the next peer review cycle, both of these centers will be phased out by the end of FY 1991.

Furthermore, as I understand it, the Shriver Center and the KU program will be competing directly against the MRCCs at both Boston Children's Hospital and the University of Wisconsin for only two funding slots in the FY 1991 competition (along with other prominent universities from across the United States).

I consider the loss of any of these existing centers to be unacceptable. It requires years of investment to develop a high quality research infrastructure, all of which would be lost without additional support. Moreover, the national network of MRRCs have made extraordinary contributions to our Nation's efforts to prevent mental retardation and other developmental disabilities. For example, their most well known research achievement was the discovery of Fetal Alcohol Syndrome in the mid-1970's and the development of techniques designed to prevent it. In addition, phenylketonuria (PKU), a metabolic disorder that previously caused irreversible mental retardation in thousands of Americans, is now entirely preventable with a simple dietary supplement. In fact, a vase majority of states (including Kansas, Iowa and Massachusetts) now require PKU testing at birth using a screening method also devised by the MRRCs.

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In view of this outstanding record as well as the exciting new research that the Shriver Center and KU are now pursuing in the areas of gene therapy and molecular biology, I urge the creation of two additional MRRCs in FY 1991 at a total cost of %1.5 million. Using this method, we dramatically increase the prospects of retaining all the centers now at risk. However, I do not favor earmarking federal dollars for the specific institutions. I have great respect for the quality of research conducted at KU and the Shriver Center. If the two additional funding slots are created for the upcoming competition, I am very confident that both these MRRCs will submit successful applications.

In closing, let me also point out that for the last three consecutive fiscal years, NICHD has issued Professional Judgement Budgets calling for an increase in the number of these centers. Clearly the Institute itself acknowledges the interest of nationally recognized universities in mental retardation research and the scientific merit of the existing centers. In my view, federal policy should encourage both strong competition within as well as growth of the MRRC network.

Because you are one of the Senate's leading voices on behalf of persons with developmental disabilities, I know that you will give this request every consideration.

Sincerely,

Bob Dole
Minority Leader