The Huntington’s Disease Foundation (HDF) is proud to announce our new name, Huntington’s Disease Foundation, with the same unwavering commitment to fund transformative research to find treatments, and ultimately a cure, for Huntington’s disease (HD). As part of the name change, we have adopted a new logo that reinforces over 55 years of dedication to the HD community.
HDF was established in 1968 by Dr. Milton Wexler, after his wife Leonore was diagnosed with Huntington’s disease. Milton was determined to understand more about the disease, knowing it was hereditary and his children had a 50% risk of inheriting HD. His daughter, Dr. Nancy Wexler, joined the cause and became a pioneer in advancing genetics. She led the HDF’s history-making Venezuela Project, a 22-year international research team, studying the world’s largest Huntington’s disease family, collecting tissue samples, and developing a family tree of over 18,000 individuals spanning 10 generations.
In 1983, HDF formed the Gene Hunters, a collaboration of 100 international scientists who, a decade later, used the clinical information from Venezuela to identify the HD gene – a landmark achievement that revolutionized Huntington’s research and was instrumental in launching the Human Genome Project.
“This name change is more than symbolic—it is a powerful reaffirmation of our purpose,” said Meghan Donaldson, CEO of the Huntington’s Disease Foundation. “As a member of an HD family, I know firsthand the urgency of our mission. The Huntington’s Disease Foundation will continue driving research forward with the goal of bringing real treatments to the HD community.”
Since our inception, HDF has been rooted in collaboration and innovation and continues to fund some of the brightest minds. In 2023, HDF initiated its $1 million Transformative Research Awards (TRAs), HDF’s largest grants, to support teams working to pursue new approaches to study Huntington’s disease mechanisms and treatments. In addition, we fund annual research grants and postdoctoral fellowships, investing a total of over $15.5 million since 2020 to advance groundbreaking science.
About Huntington’s Disease Foundation
Huntington’s Disease Foundation, formerly known as Hereditary Disease Foundation, funds transformative research to find treatments, and ultimately a cure, for Huntington’s disease. Research organized by HDF led to the discovery of the genetic marker for HD and the gene that causes HD. Huntington’s disease is a fatal, inherited brain disorder that causes psychiatric changes, cognitive problems, and uncontrollable movements that progress over 10-20 years. Each child of an affected parent has a 50% risk of inheriting the gene which causes the disease. Currently there is no cure.
Source: Huntington’s Disease Foundation; Contact: Debra Karrat, 917-842-7366 / debrakarrat@hdfoundation.org