The John Merck Fund Seeks to Make National Impact on Improving the Lives of Individuals with Down Syndrome and Fragile X

April 3, 2012

Nancy Stockford
The John Merck Fund
2 Oliver Street, 8th Floor
Boston, MA 02109
(617) 556-4120


The John Merck Fund has launched a translational research awards program aimed at achieving breakthroughs in the treatment of developmental disabilities, particularly Fragile X and Down syndromes, as part of a 10-year spendout of its resources. The Translational Research Program, for which award competition guidelines have been posted at, replaces the John Merck Scholars Program in the Biology of Developmental Disabilities. Starting this year, it will provide four-year awards of $250,000 annually for research projects recommended by a seven-member scientific advisory board and approved by the Fund's trustees. In parallel to the translational research initiative, the Fund plans in 2013 to launch the Research to Clinical Practice Program, which will identify and disseminate gold-standard treatment protocols for Fragile X, Down syndrome and other targeted conditions.

"The Scholars Program made important contributions to the field of basic brain science by supporting the work of outstanding young neurobiologists and cognitive scientists," said Marsha Mailick Seltzer, director of the Waisman Center at the University of Wisconsin-Madison and chair of the scientific advisory board. "Nevertheless, the John Merck Fund's board concluded that in the Fund's final 10 years, it would like to support more direct and immediate ways to improve treatment and outcomes for people with developmental disabilities. We're hopeful the Translational Research and Research to Clinical Practice programs will make a major national impact."

Said Trina Whitridge, a John Merck Fund trustee and granddaughter of Serena Merck: "We hope that through focused funding during a decade-long period, we can fulfill my grandmother's dream to improve the lives of children with developmental disabilities and their families."

The John Merck Fund, a New York charitable trust with its administrative offices in Boston, was established by the late Serena Merck in 1970. She named it for her son, who had developmental disabilities. For the first 16 years, the Fund worked exclusively to support research into children's developmental disabilities. Beginning in 1986, it added programs in other fields that were of concern to Mrs. Merck and her late husband, George W. Merck, longtime president of the Merck pharmaceutical company.

Currently the Fund has four program areas, Developmental Disabilities, Clean Energy, Environmental Health and Regional Food Systems. Looking to achieve the maximum possible impact in these four areas, the Fund's board of trustees voted last year to spend out all of the foundation's resources during 2012-21. Of the estimated $90 million in grants the Fund expects to make over the 10-year period, nearly $15 million is earmarked for the developmental disabilities area, namely for the Translational Research and Research to Clinical Practice programs. According to scientific advisory board chair Seltzer, "we are targeting Fragile X and Down syndromes because of their prevalence as primary causes of developmental disabilities and also because of the promise of recent scientific advances for both of these conditions with respect to prospects for treatments." The John Merck Fund aims to bring the same type of positive outcome to Fragile X and Down syndromes as other foundations have brought to research on autism, Seltzer said.

Fragile X syndrome is the leading inherited cause of intellectual disability (ID), and Down syndrome is the most prevalent genetic cause of ID. In both fields, scientific advances have recently been achieved that have paved the way for the development of pharmaceutical and behavioral treatments, with the promise of improving the quality of life and reducing disability for individuals who are affected. The John Merck Fund aims to accelerate the pace of discovery and the impact of translational research focused on Fragile X and Down syndromes. According to Seltzer, "we believe that in our lifetime, the challenges of disability caused by Fragile X and Down syndromes can be reduced as a result of scientific breakthroughs, and The John Merck Fund is targeting its efforts to make this type of game-changing impact on individuals living with the conditions and their families."

Guidelines for the translational research initiative call for researchers who are working to develop treatments and improve outcomes for individuals with developmental disabilities, particularly Down syndrome and Fragile X syndrome, to submit preliminary proposals by May 15. The Scientific Advisory Board (SAB) will review all the preliminary proposals and select a limited number for full proposals to be submitted by September 17. The SAB will recommend the successful investigator(s) to the Fund's Board of Trustees for approval by mid-December. Applicants will be notified of the results of the decision by the end of December. Guidelines for the Research to Clinical Practice Program are in development and will be announced by the end of the year.

The Scientific Advisory Board, which consists of distinguished experts in research and treatment of developmental disabilities, is chaired by Marsha Mailick Seltzer, PhD (University of Wisconsin-Madison). The Board includes the following members: Elisabeth Dykens, PhD (Vanderbilt University), Michael Guralnick, PhD (University of Washington), Charles Nelson, PhD (Children's Hospital Boston/Harvard Medical School), Joseph Piven, MD (University of North Carolina), and Brad Schlaggar, MD, PhD (Washington University in St. Louis). George Jesien, PhD, Director of the Association of University Centers on Disability (AUCD) is an ex-officio member.

Advisory Board member Elisabeth Dykens recently remarked that that the field of developmental disabilities is "brewing with advances that are begging to be translated into actual practice."