Child with juvenile HD with HDF President Nancy Wexler
In 1968, a biomedical detective story began with one family's personal heartache. It eventually stretched from the poorest villages of Venezuela to the most advanced research laboratories in the world.
The Hereditary Disease Foundation (HDF) aims to cure genetic illness by supporting basic biomedical research. The HDF was started by Dr. Milton Wexler in 1968 when his wife was diagnosed with Huntington's disease (HD). The Foundation uses a variety of strategies - workshops, grants, fellowships, and targeted research contracts - to solve the mysteries of genetic disease and develop new treatments and cures.
Huntington's disease is a fatal, dominantly inherited, genetic, neurological disorder causing involuntary movements, severe emotional disturbance and progressive cognitive loss over ten to twenty years. Each child of an affected parent has a 50% risk of inheriting HD, usually in the third or fourth decade of life, though children as young as two years and adults in their eighties may also develop symptoms.
The Hereditary Disease Foundation uses Huntington's disease as a model for hereditary disease research because it is triggered by a mutation of one single gene. Progress toward treatment or a cure could be instrumental in finding ways to treat other illnesses with more complex genetics, including Parkinson's, Alzheimer's, Lou Gehrig's disease (ALS), depression, schizophrenia, and cancer.
The Hereditary Disease Foundation has given over $50 million to support pioneering research in genetics, gene therapy, molecular and cell biology, cell survival and death, animal models, neurophysiology, neuropharmacology and other areas relevant to understanding inherited diseases.
The Hereditary Disease Foundation played a key role in the discovery of the HD gene, which was localized in 1983 and isolated in 1993. The HDF recruited and supported more than 100 scientists worldwide who worked together as the Huntington's Disease Collaborative Research Group in a ten-year search to capture the gene. The New York Times called the quest for the HD gene "legendary in less than a decade"; the gene, itself, the most "coveted treasure in molecular biology."
New technologies developed during the HD gene search - supported by the Hereditary Disease Foundation - have been widely used in mapping genes for other disorders including cystic fibrosis, Parkinson's, Alzheimer's, cancer, heart disease and mental illness. These successes helped to launch the Human Genome Project.
"If one looks back in the development of human genetics in our current form, I think the Hereditary Disease Foundation played really the same role that the Rockefeller Foundation played in the 30s and 40s, when it permitted the development of molecular biology. It was a small group of people who weren't waiting around, but were giving money to the right people, with the thought that it was sensible."
November 1, 2005
Dr. James D. Watson
Chancellor, Cold Spring Harbor Laboratory
Nobel laureate, 1962
Milton Wexler Workshop Program
A centerpiece of the Foundation is the interdisciplinary Workshop Program which sponsors Workshops held many times during the year. Milton Wexler began the Program to bring scientists together from different academic disciplines to brainstorm - without prepared lectures or slides - and explore new directions for research. They often share unpublished data.
"This is the best meeting I've ever been to...I really think that all meetings should be run as this one. There are no slide shows. There are no politics. There are just scientists who come together to discuss the issue at hand."
Dr. Günter Blobel, Nobel laureate, 1999
John D. Rockefeller, Jr. Professor at Rockefeller University
The Basic Research Grants Program supports projects that contribute to identifying and understanding the fundamental defects in Huntington's disease and related disorders.
The John J. Wasmuth Postdoctoral Fellowships are named in honor of the late John Jacob Wasmuth, an essential member of the Huntington's Disease Collaborative Research Group. Our hope is that those granted fellowships bearing his name will seek John's level of imagination, rigor, creativity and spirit.
The Lieberman Award is presented annually to a worthy scientist, thanks to the generosity of Harry Lieberman, a trustee of the Hereditary Disease Foundation.
The Milton Wexler Postdoctoral Fellowship Award is named after the founder of the Hereditary Disease Foundation. The Hereditary Disease Foundation restricts this annual award to research highly relevant to curing Huntington's disease.
Giving to the Hereditary Disease Foundation
Donations are accepted by check and credit card. For other ways of giving or more information, see the Give to HDF section of our website at http://www.hdfoundation.org/support.php or call Karen Dean, Controller, at 212.928.0420.
The Hereditary Disease Foundation is a non-profit 501(c)(3) organization.
"The Hereditary Disease Foundation spends less...for promotion, salaries, etc. No other organization comes close. Its integrity is exemplary."
The Late Ann Landers
Hereditary Disease Foundation Leadership
The New York Times, The Wall Street Journal, Los Angeles Times Sixty Minutes, Day One, and NOVA have all acknowledged the influence of the Hereditary Disease Foundation in pioneering new approaches in science and medicine.
Dr. Milton Wexler, Founder of the Hereditary Disease Foundation, was a distinguished psychoanalyst who did pioneering research on schizophrenia. Until his death in March, 2007 at age 98, he played a strong role in guiding the Foundation. Learn more about him on the HDF website.
Dr. Nancy Wexler, Columbia University Higgins Professor of Neuropsychology and President of the Hereditary Disease Foundation, is a member of the Institute of Medicine of the National Academy of Sciences, the American Academy of Arts and Sciences, and the European Academy of Sciences and Arts, and a Fellow of the Royal College of Physicians. She has received numerous awards including a Fulbright fellowship, the Robert J. and Claire Pasarow Foundation Award, University of Michigan Alumnae Athena Award, J. Allyn Taylor Prize and the Society for Neuroscience Public Advocacy Award, as well as several honorary doctorates. In 1993, she received the prestigious Albert Lasker Public Service Award. In 2007, she was awarded the Benjamin Franklin Medal in Life Science from the Franklin Institute.
Dr. Alice Wexler, a Hereditary Disease Foundation trustee, has told the Foundation and Wexler family story in a widely acclaimed book, Mapping Fate: A Memoir of Family, Risk, and Genetic Research. Alice's next book on the social history of Huntington's disease will be published by Yale University Press.
Dr. Carl Johnson, Executive Director for Science of the Hereditary Disease Foundation, joined the HDF in January 2001. He is an accomplished chemist and model organism molecular geneticist. He has worked in the biotechnology industry for over 20 years. In 1990, he and HDF Scientific Advisory Board member and Nobel Prize winner H. Robert Horvitz founded NemaPharm, Inc., the first functional genomics company focused exclusively on the discovery of human therapeutics based on technologies using a well-studied model animal, the nematode (or roundworm) Caenorhabditis elegans.
The HDF Scientific Advisory Board (SAB) is made up of 29 scientists from around the world, including Nobel laureates, members of the National Academy of Science and its Institute of Medicine, members of the American Association of Arts and Sciences, among others.
For a complete listing of SAB members and HDF Leadership, please visit www.hdfoundation.org.
To learn more about the HDF and to read about our achievements, click here.