About the Hereditary Disease Foundation

The mission of the Hereditary Disease Foundation is to fund transformative research to find treatments, and ultimately a cure, for Huntington’s disease and other related disorders.

Dr. Nancy Wexler in Venezuela studying the HD family tree, encompassing over eighteen thousand individuals, spanning 10 generations
Dr. Nancy Wexler in Venezuela studying the HD family tree, encompassing over 18,000 individuals, spanning 10 generations.

The Hereditary Disease Foundation (HDF) was established in 1968 by Dr. Milton Wexler after his wife Leonore was diagnosed with Huntington’s disease (HD), which meant their daughters Alice and Nancy were also at risk.

From 1979 to 2002, Dr. Nancy Wexler led a team of medical researchers to Venezuela, which has the world’s highest prevalence of HD, to gather clinical data working with thousands of HD patients and their families. In 1983, the HDF formed the Gene Hunters, a collaboration of 100 international scientists who, a decade later, identified the Huntington’s disease gene using this information. This stunning discovery has laid the foundation for all research on HD.

WHAT is Huntington’s disease

Huntington’s disease is a fatal, inherited brain disorder that causes psychiatric changes, cognitive problems, and uncontrollable movements that progress over 10-20 years. HD usually presents between age 30-50, but it can strike as early as 2 or as old as 80. Each child of an afflicted parent has a 50% risk of inheriting the gene which causes the disease.

Currently there is no cure.

Watch HDF’s Director of Research webinar Huntington’s Disease Research: History and Hope.

WHY HDF is unique

  • We were the catalyst for research that isolated the gene that causes Huntington’s disease, leading to the development of a genetic test for HD and launching modern research efforts.
  • We advance paradigm-changing Huntington’s research that directly impacts other neurodegenerative diseases like ALS, Parkinson’s and Alzheimer’s.
  • We champion collaborative science through small think tank workshops, international conferences and webinars.
  • We engage and retain the brightest minds in research by funding and mentoring early-career scientists.
  • HDF-funded researchers have made significant strides in applying advanced techniques such as Artificial Intelligence (AI), CRISPR and brain mapping, leading to tremendous promise for potential treatments.

HOW we are working toward a cure

The Hereditary Disease Foundation supports a collaborative approach to scientific discovery.

We invest in research by providing senior scientists with grants, including our million-dollar Transformative Research Awards, and funding the work of early career scientists through postdoctoral fellowships. We organize scientific conferences enabling experts in HD to share their latest discoveries, explore cutting-edge technologies, and form collaborations. We highlight for the public notable work of scientists through our research webinars.

WHO is part of it

By partnering with scientists, Partners in Research, donors, corporate sponsors, and HD families, we make a significant impact on advancing research in Huntington’s disease. Together we make a difference.

Read more about HDF’s commitment to research.