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Build Hope for HD—Support HD Research and the HD Community

Help support a clinic vital to the Huntington’s disease (HD) community and genetic research!

By clicking on the icon above before the end of the year, you can help Build Hope for HD. For each click, Lundbeck will donate $15 to the Casa Hogar, up to $25,000.

Your click helps the clinic continue to serve its community and support the families who have given so much.

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.

Thirty years ago, scientists supported by the Hereditary Disease Foundation successfully discovered the location of the HD gene using DNA markers. This was the first time scientists used DNA markers to discover a gene.1

Twenty years ago, the Gene Hunters—100 brilliant scientists supported by the Hereditary Disease Foundation—discovered the HD gene itself after collaborating globally for a decade.1

A group of families along the shores of Lake Maracaibo, Venezuela was critical to these groundbreaking scientific breakthroughs. It is because of their generosity and collaboration that the HD marker and gene were found. They helped shape science and change the world forever!

The Casa Hogar Corea de Huntington Amor y Fe (Huntington’s Chorea Home of Love and Faith) has served the HD community in Venezuela for more than a decade. HD is an incurable genetic condition causing uncontrolled movement, behavioral changes and mental deterioration. 2

  1. Hereditary Disease Foundation: The Venezuela Huntington’s Disease Project. Accessed 10/4/2013.
  2. Marshall FJ, Clinical Features and Treatment of Huntington’s Disease. Movement Disorders 2004; 1:589-596

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.

Newsletter Now Available
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.”

Click here to read the introduction to the "50 Women" slideshow.

Click here to read about the work of Nancy Wexler.

Read the full article here and SEE SLIDE 51!

March, 2013
HDF President Nancy Wexler is co-author on two major new studies of HD prevalence.

Evans SJ, Douglas I, Rawlins MD, Wexler NS, Tabrizi SJ, Smeeth L. "Prevalence of adult Huntington's disease in the UK based on diagnoses recorded in general practice records." J Neurol Neurosurg Psychiatry. 2013 Mar 29.

Douglas I, Evans S, Rawlins MD, Smeeth L, Tabrizi SJ, Wexler NS. "Juvenile Huntington's disease: a population-based study using the General Practice Research Database." BMJ Open. 2013 Apr 3;3(4).

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

September, 2012
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 -

February 3, 2012
Herbert Pardes, HDF Board of Director member, featured in Psychiatric News - "Psychiatry Superstar Dials Back Distinguished Career"

January, 2012
HDF President Nancy Wexler's review article “Huntington's Disease: Advocacy Driving Science” was featured as the lead article in the 2012 Annual Review of Medicine.

Huntington's disease has been popular in the news: Three articles were published in the June 30, 2010 issue of The Lancet

Listen to The Lancet press conference here, 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.

Listen here.

Finally, The Guardian published an article on June 30, 2010, “Fear of insurance penalties keeps Huntington's sufferers in the shadows” in the June 30, 2010 paper.

Read it

EXCITING NEWS - Breakthrough in Huntington's disease featured on the NBC Nightly News!

Visit for breaking news, world news, and news about the economy

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

Please click here to read our press announcement about the show.

New Data Point To Huntington's Disease Hope

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

December 2008
The Hereditary Disease Foundation has created
to honor the memory of Leslie Gehry Brenner,
daughter of HDF Vice-President Frank Gehry.

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.

Click below to listen to the speech.

Tetrabenazine News—USA Today, October 28, 2008

“Doctors, families fought for approval of
Huntington’s Disease drug”

“Doctor spent decades getting tetrabenazine to market”

FDA Approves Tetrabenazine to Treat Chorea Associated with Huntington’s Disease!!



40 years-hereditary disease foundation-innovation, research, collaboration, community

Praise for HDF

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.
Nature Medicine, October 2000

In Memoriam

Hereditary Disease Foundation

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