Build Hope for HD—Together, We Can Make a Difference
Help support a clinic vital to the Huntington’s disease (HD) community and genetic research!
For the past four years, the Hereditary Disease Foundation has partnered with Lundbeck, a global pharmaceutical company specialized in brain disorders, to raise funds for the Casa Hogar in Maracaibo, Venezuela. Through this partnership, Lundbeck has contributed more than $260,000. This year, Lundbeck is honored to announce a five-year commitment of the program.
Huntington's disease is a hereditary disorder affecting mind and body. Each child of a parent with HD has a 50/50 chance of inheriting the disease as well. The Hereditary Disease Foundation is committed to finding treatments and cures for this fatal disease as well as other brain bandits.
The largest extended families affected by Huntington's disease - over 18,000 individuals in 10 generations - live along the shores of Lake Maracaibo, Venezuela. Since 1979, the Hereditary Disease Foundation has organized and supported a team of researchers who worked with the Venezuelan community to learn more about the genetics of HD. By collaborating with the Venezuelans, the research team discovered HD marker, the very first DNA marker for any gene in 1983. The Hereditary Disease Foundation formed and supported the "Gene Hunters," a group of about 80 researchers who collaborated exhaustively for a decade to find the HD gene in 1993. This groundbreaking discovery helped launch the Human Genome Project.
In 1999, the Hereditary Disease Foundation helped to create and has continued to support the Casa Hogar Corea de Huntington Amor y Fe (Huntington's Chorea Home of Love and Faith). This Venezuelan clinic provides free general and HD-specific medical treatments, food, care and an integrated nursing home to thousands of family members with HD who live along the shores of Lake Maracaibo.
Thank you for joining us as we Build Hope for HD and support the Casa Hogar! As research continues, cures for HD and related disorders are within our grasp. Your support can help make the next discovery possible.
Foundation Responds Aggressively to
Theft by Former Controller
December 23, 2014. Beginning in June 2014, after discovering fraudulent transactions by its former controller, the Hereditary Disease Foundation undertook an extensive investigation, including a forensic audit conducted by outside counsel. The Foundation furnished the results to the U.S. Department of Justice which resulted in the arrest of the former controller, as reported in the New York Times on November 18, 2014. Although the theft was substantial (about $1.8 million over several years), only a small amount of research grant monies committed before 2014 was compromised. All 2014 donor contributions are secure. The Foundation’s professionally-managed endowment was never in jeopardy.
The Foundation has undertaken significant measures to assure that this will not occur again. The Board of Directors expanded the leadership team in October 2014 by hiring its former outside counsel to serve as the Foundation’s Chief Executive Officer and Vice President - Legal Affairs. Earlier in 2014, the Foundation hired a Controller and Associate Controller, both of whom have substantial experience with financial management of non-profit organizations, and implemented additional financial controls. The Board of Directors also established an Audit Committee comprised of three independent board members all of whom are financially literate and have experience with the audit process. The Audit Committee has engaged a new auditor that has a very large audit practice with non-profit organizations. The former controller was indicted in December 2014 on counts of fraud, tax evasion and money laundering, and is now in government detention. In order to assure transparency, the Foundation will publicly disclose subsequent developments in this matter that it believes may be of concern to our donors.
Hereditary Disease Foundation is confident that henceforth donor contributions will be used to further the mission of the organization to support scientific research leading to development of therapeutics and diagnostics for Huntington's Disease and other neurodegenerative diseases.
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June 18, 2013
PLEASE LISTEN - HDF President Nancy Wexler on WNYC’s Freakonomics Radio
Hereditary Disease Foundation President Nancy Wexler spoke to Stephen Dubner, host of WNYC’s Freakonomics Radio, about how people at risk for Huntington’s disease think about and plan for the future. The episode will be available on iTunes to podcast subscribers on Wednesday evening, June 19, and on the Freakonomics website starting Thursday morning, June 20.
Download the entire Spring 2013 newsletter as a PDF file now.
March 18, 2013
HDF President Nancy Wexler was selected as one of the "50 Women Who Shaped America's Health.”
February 28, 2013 - Longtime HDF friend and fellow Gene Hunter Francis Collins, M.D., Ph.D., Director, National Institutes of Health, wrote a blog entry in honor of Rare Disease Day. To read it online – and to listen to Woody perform one version of "This Land" – visit Francis's blog.
Download pdf here
Please watch this video about the Casa Hogar, a unique nursing home in Venezuela – home to the families who donated their DNA and information to find the HD gene – for the benefit of all worldwide.
The Casa Hogar is staffed by their own family members. They need your support more than ever!
June 15, 2012
Episode 8 of the Charlie Rose Brain Series II, "Parkinson's disease, Huntington's disease, and other Prion-based Neurological Disorders," IS AVAILABLE TO WATCH ONLINE - http://www.charlierose.com.
Listen to The Lancet press conferencehere, featuring Alice Wexler
Listen to an interview with Nancy Wexler and Sir Michael Rawlins on the BBC Today - 'Real need' for Huntington's research
Medical experts say that the devastating brain condition Huntington's disease is at least twice as common as was previously thought.
Sir Michael Rawlins, Honorary Professor at the London School of Hygiene and Tropical Medicine, and Nancy Wexler, Hereditary Disease Foundation President and Professor of Neuropsychology at Columbia University, examine the implication of the findings.
Aired Monday, May 10, 2010, on the NBC Nightly News with Brian Williams, Robert Bazell, Chief Science Correspondent, interviews Hereditary Disease Foundation President Nancy S. Wexler, as well as longtime Hereditary Disease Foundation-supported researcher X. William Yang, M.D., Ph.D., about William's recent and exciting research findings on Huntington's disease at UCLA! Click here for details to the story
February 8, 2010—A study being published Monday offers hope for those with Huntington's disease. The Archives of Neurology has a report about a drug aimed at the serious cognitive deficits that people with Huntington's also suffer. LISTEN NOW
Click below to listen to Alice Wexler's fantastic interview
on NPR on Wednesday, October 1, 2008,
where she discussed her new book,
The Woman Who Walked into the Sea: Huntington's
and the Making of a Genetic Disease and so much more!!!
She was the featured author on
The Diane Rehm Show, National Public Radio's flagship broadcast on books and critical issues of the day.
A Voice of HD—Click here for an incredibly
brave and inspiring essay read anonymously at
the August 2008 "Milton Wexler Celebration of Life"
Symposium in Cambridge, MA.
Everything I know about genomics I learned first at Hereditary Disease Foundation workshops!
Francis Collins, M.D., Ph.D.
Director, National Human Genome Research Institute
Recipient, Presidential Medal of Freedom, 2007
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
Winner of the Nobel Prize in Physiology or Medicine in 1962
Through the years, I have been blessed to work with superb and
dedicated people, and I count the three of you, Milton, Nancy and Alice
Wexler, to be at the top of that list.
Dr. Francis S. Collins, Director
National Human Genome Research Institute
National Institutes of Health
Through the active recruitment of new ideas, new technologies and
new researchers, the Hereditary Disease Foundation has set the stage for
important progress in our understanding of HD pathology. Their commitment
to collaboration and community building within the HD field serves as a
model for all scientific groups tackling human diseases.