#USA #New York #Huntington's Disease #genetic research #Hereditary Disease Foundation

Huntington's Disease Foundation: A New Identity

The Hereditary Disease Foundation (HDF) has recently embraced a significant change by rebranding itself as the Huntington's Disease Foundation. This new name not only reflects the organization's focus but also symbolizes its steadfast commitment to advancing research dedicated to Huntington's disease (HD). With a rich history of over 55 years supporting the HD community, the foundation's mission remains unwavering despite the change.

Founded in 1968 by Dr. Milton Wexler in response to his wife's diagnosis of Huntington's disease, the organization has its roots deeply embedded in the personal narrative of the Wexler family. Milton's determination to understand the hereditary nature of the disease stemmed from his awareness that his children faced a 50% risk of inheriting it. Dr. Nancy Wexler, his daughter, has become a leading figure in the field of genetics. Her leadership in the noteworthy Venezuela Project marked a pivotal moment in Huntington's research, where an international team spent 22 years studying the world's most extensive Huntington's disease family, which encompassed individuals across ten generations.

Another pivotal milestone for HDF occurred in 1983 with the formation of the Gene Hunters—a collaborative endeavor that united 100 scientists from various nations. This partnership culminated in the identification of the Huntington's disease gene, a groundbreaking achievement that transformed the landscape of Huntington's research and played a crucial role in the launch of the Human Genome Project. The legacy of these efforts is a testament to the foundation's innovative approach and collaborative spirit.

Meghan Donaldson, the current CEO of the Huntington's Disease Foundation, voiced the significance of the name change, stating, "This name change is more than symbolic—it is a powerful reaffirmation of our purpose." As a member of an HD family, she speaks from experience regarding the urgency of their mission. The newly branded foundation is committed to propelling research initiatives forward with a clear goal: to bring effective treatments to the Huntington's community.

In terms of financial commitments, HDF has taken groundbreaking steps in 2023 by initiating its $1 million Transformative Research Awards (TRAs), which represent the largest grants in the foundation's history. These awards aim to support various research teams exploring innovative ways to understand the mechanisms of Huntington's disease and develop treatments. Moreover, the foundation continues to fund annual research grants and postdoctoral fellowships, having invested over $15.5 million since 2020 to promote groundbreaking scientific advancements.

Huntington's disease itself is a devastating inherited condition characterized by the degeneration of brain cells, which leads to severe psychiatric, cognitive, and motor function impairments. The condition progresses over a span of 10 to 20 years, and sadly, there remains no cure as of now. However, the Huntington's Disease Foundation is dedicated to changing this narrative.

Overall, while the organization's name may have changed, its mission to find effective treatments and ultimately a cure for Huntington's disease remains the same, driving their efforts as they look towards a future where the community may finally find hope.

For further information, you can visit HDFoundation.org.