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In The News

Thursday, September 15, 2011
Build Hope for Huntington's Disease: Keep Groundbreaking Clinic Open
Join Lundbeck and the Hereditary Disease Foundation in a campaign to support the Venezuelan families who made groundbreaking Huntington's disease research possible. Click here to read more.

Thursday, January 27, 2011
The University of Massachusetts and Lundbeck Inc. Enter Research Collaboration to Explore
Potential Targeted Therapy for Huntington's Disease
Gene silencing - a promising, revolutionary approach to curing Huntington's disease - gets a boost from a new academic-company partnership!
Neil Aronin, M.D., Professor of Medicine and Cell Biology, Department of Medicine and Graduate School of Biomedical Sciences, Chief, Division of Endocrinology and Metabolism, Co-Director, Neuro-therapeutics Institute, University of Massachusetts Medical School, shakes hands with Lundbeck Inc. to synergize the work.
Neil Aronin; Beverly L. Davidson, Ph.D., Roy J. Carver Professor in Internal Medicine, Professor in Neurology, and Physiology & Biophysics, Director, Gene Transfer Vector Core, Associate Director, The Iowa Center for Gene Therapy, Vice Chair for Research, Department of Internal Medicine, University of Iowa; Henry L. Paulson, M.D., Ph.D., Lucile Groff Professor, Department of Neurology, University of Michigan Health System; and X. William Yang, M.D., Ph.D., Associate Professor, Center for Neurobehavioral Genetics, Semel Institute for Neuroscience & Human Behavior, Department of Psychiatry & Biobehavioral Sciences, Brain Research Institute, David Geffen School of Medicine at UCLA - all silencing and animal model pioneers - have joined the 2011 Hereditary Disease Foundation Scientific Advisory Board.

Click here to read about this exciting collaboration.

Thursday, August 19, 2010
BBC: “Venezuelan village key in search for Huntington's cure”
The village of Barranquitas in Venezuela has the highest concentration of Huntington's disease, a devastating brain condition, in the world. The BBC's Will Grant accompanies Hereditary Disease Foundation President Nancy Wexler there as she continues her life's work to find a cure.

Click here to watch the 9 minute BBC Newsnight TV piece.

Click below to listen to the BBC Radio 4's program about Huntington's disease in Venezuela.

Read it here Or click here to read it directly from the BBC website where you can watch accompanying videos.

This evening, at 10:30pm UK time, watch Will Grant's film from Venezuela in full on Newsnight on BBC Two, then afterwards, for those in the UK, on BBC iPlayer . This can only be watched LIVE from within the UK. This will air on BBC2 at 10:30pm. Otherwise you should be able to watch it online once it is broadcast.

A 3-minute piece for an international audience will air on BBC World TV (available to most cable subscribers). This TV piece will be repeated throughout the day on World TV on cable.

There will be a 4-and-a-half minute radio package for an international audience. You can listen live via the website to BBC Radio 4's PM program. If you're in the UK, you can listen directly to the radio program.

There will also be a 4-and-a-half minute radio package for the domestic British audience on the current affairs program, PM.

Wednesday, August 18, 2010
Venezuelan families were featured in today's Financial Times
Click here for today's Financial Times article and accompanying photos, "Venezuela village holds cure for hereditary illness," by Benedict Mander in Barranquitas, Venezuela.
Benedict has written thoughtfully about the families suffering from Huntington's disease in the village of Barranquitas, Venezuela. He was able to expertly capture the dignity of these wonderful people and the tragedy of their circumstances.

Wednesday, July 28, 2010
Nancy Wexler’s visit to Venezuela is featured in the July 28, 2010 issue of Panorama, a newspaper from Maracaibo, Venezuela!
Read it here

Monday, May 10, 2010
EXCITING NEWS - PLEASE WATCH TONIGHT, Monday, May 10 - NBC Nightly News with Brian Williams and Robert Bazell (CONFIRMED)

Dear Friends, May is HD Awareness Month. The following piece on the NBC Nightly News with Brian Williams will air just in time!! Please pass this information on to all of your family, friends and colleagues!!! AIRING TONIGHT (Monday, May 10) 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! In Los Angeles and the West Coast as well as New York City, the show airs between 6:30-7pm. In Central Time, it airs at 5:30. PLEASE CHECK YOUR LOCAL LISTINGS!

X. William Yang, M.D., Ph.D., is Associate Professor, Semel Institute and Department of Psychiatry & Biobehavioral Sciences at the David Geffen School of Medicine at UCLA. He has made many critical contributions to solving the Huntington's disease puzzle!

William created the first “Bacterial Artificial Chromosomes” (BAC) transgenic mouse model of HD. This mouse expresses the entire human, abnormal HD gene. These mice show multiple behavioral and brain changes, similar to people with HD. His BACHD model is now widely used internationally to better understand the illness. It is also used to test candidate therapies for Huntington's disease.

William pioneered a series of Huntington's disease mouse models in which the expression of the abnormal huntingtin protein can be switched on or off in different cell types in the brain. Using these models, he showed that the abnormal huntingtin protein, expressed in one type of nerve cells, can make their neighbors sick.

In a recently published study, using yet another set of BACHD mouse models, William’s group demonstrated a molecular switch which lies in the very end of the abnormal huntingtin protein. William and his colleagues found that by modifying – or “flipping” – that switch, they can prevent the appearance of HD symptoms in these mice.

To demonstrate this, William and his colleagues genetically engineered mice expressing the abnormal huntingtin protein, with subtle changes. In one group of mice, he mimicked a chemical tag, called “phosphorylation.” These mice were cured of the disease and did not develop any symptoms.

In another group of mice, he engineered the mice to resist such chemical tagging. These mice got sick with HD symptoms.

William’s group showed that, in mice, mimicking phoshorylation can prevent the onset of the disease. His study demonstrates the vital importance of discovering new HD treatments that can work through this neuroprotective molecular switch.

February 5–6, 2008
HDF-Lou Ruvo Brain Institute Common Threads Workshop II—Calcium in Neurodegeneration, Las Vegas, Nevada.

January 27, 2008
Gene Delivery and New Developments Workshop, Santa Monica, California.

Recent Science Funding Provided by the Hereditary Disease Foundation
Hereditary Disease Foundation grants, postdoctoral fellowships and research contracts are helping identify routes to the development of cures and treatments for Huntington’s disease and other similar hereditary disorders. With your support, the HDF’s Scientific Advisory Board, comprised of world-renowned experts in genetics, neurology, neuroscience, and therapy development, has funded groundbreaking research.

HDF raises over $2 Million at the 40th birthday celebration
and tribute to its founder, Milton Wexler!!
Thursday, January 24, 2008
Casa del Mar
Santa Monica, CA
Click here for more information about the Benefit


© Mariana Cook 1992

March 20, 2007

Dearest Friends and Family,

An unimaginable day has finally arrived.

Dr. Milton Wexler, a force of nature whose visionary presence changed hundreds of thousands of lives for the better, died Friday, March 16, 2007 of respiratory failure.

As he himself said, “I’ve had a very good ride through this life.”

Even though he died at age 98 and a half, he was as innovative, lucid, imaginative, creative and ahead of the curve as he was as a young man – he only got better with age! We want another century with him, at least – we miss him terribly.

In lieu of flowers, please send contributions to the Hereditary Disease Foundation, the organization Milton founded in 1968. For the past 40 years, he has been passionately devoted to finding cures for Huntington's disease and related disorders.

Donations made payable to the Hereditary Disease Foundation can be mailed to the Hereditary Disease Foundation, 3960 Broadway, 6th floor, New York, NY 10032. Contributions by credit card can be made online on the Hereditary Disease Foundation website –

Nancy and Alice Wexler

Click here to read Milton's obituaries.


Hereditary Disease President Nancy Wexler to Receive Benjamin Franklin Medal in Life Science!
For 182 years, The Franklin Institute has honored the greatest men and women of science, engineering, and technology. The Franklin Institute Awards are among the oldest and most prestigious comprehensive science awards in the world.

Nancy Wexler featured in Monday, 4/23/07, Philadelphia Inquirer.

Among science's highest honors, The Franklin Institute Awards identify individuals whose great innovation has benefited humanity, advanced science, launched new fields of inquiry, and deepened our understanding of the universe.

HDF Leadership—President Nancy Wexler and Lifetime Director Julie Andrews featured in the March/April 2007 issue of Neurology Now magazine.

March 18, 2007 Sunday New York Times' front page article about one young woman's experience in testing positive for Huntington's disease "Confronting Life With a Lethal Gene," by Amy Harmon.

Hereditary Disease Foundation President Nancy Wexler is quoted in the beginning of the article.

Now Available: Tetrabenazine to Treat Chorea

Xenazine* (tetrabenazine) Tablets, the first and only U.S. Food and Drug Administration (FDA) approved drug for the treatment of chorea associated with Huntington’s disease, is now available in the United States. This news marks a true milestone for the patients, families and health care professionals who have fought to help bring this therapy to the U.S. Xenazine will be distributed through a specialty pharmacy by Ovation Pharmaceuticals beginning today.
Click here to read HDF’s complete statement
Click here for more information about the availability of Xenazine* (tetrabenazine) Tablets

* Xenazine is a registered trademark of Cambridge Laboratories (Ireland) Limited.

Genetic Information Nondiscrimination Act (GINA) Passes in Senate Read the full press release here.


FDA Approval: Tetrabenazine to Treat Chorea

FDA advisory committee votes unanimously to recommend approval of tetrabenazine for chorea associated with Huntington's disease. This marks the first time in history that a drug could be approved in the U.S. to treat chorea associated with HD! Thank you all for your efforts and support!

Hereditary Disease President Nancy Wexler to Receive Benjamin Franklin Medal in Life Science! Read the full press release here.

Advocacy Groups as Research Organizations — HDF praised as an example of an organization that helps to accelerate the process of taking basic science to treatments and techniques. [.pdf version]

HDF Trustee Herb Pardes, President of New York-Presbyterian Healthcare System, featured in January 7, 2007 New York Times article.

Carrie Fisher Article, NY Times: "Comedic Postscripts From The Edge", November 15, 2006.

Carrie Fisher Article, Playbill: "Another Round: Carrie Fisher's Wishful Drinking Extends Run in L.A.", November 27, 2006.

Strategy to Find a Cure For Huntingtonâs Disease, Long-Supported by Hereditary Disease Foundation, Is Validated by Nobel Prize!
Congratulations to Andrew Z. Fire and Craig C. Mello,
Scientists Who Discovered RNA Interference

Awarded 2006 Nobel Prize in Physiology or Medicine!In October, Fire and Mello were awarded the Nobel Prize for their discovery of an efficient and generalizable method for selectively turning off the expression of any gene in the nematode worm C. elegans. The method is known as RNA interference or RNAi. Fire and Mello published their groundbreaking discovery in the journal Nature in February of 1998. Since that time, RNAi has been shown to be an effective method for turning off the expression of genes in a wide variety of plant and animal species, including humans. The RNAi technique is now widely used in academic and industrial research laboratories to study the function of genes and plans are underway to develop RNAi-based treatments for a wide variety of diseases, including Huntingtonâs disease (HD).

Spurred by the excitement generated by Fire and Melloâs discovery, the Hereditary Disease Foundation began to organize, champion and support the development of gene-based therapy for HD and continues to be a leader in providing funding for RNAi research.

Nancy Wexler awarded honorary doctorate from Yale University, May 22, 2006. [.pdf version]

HDF Trustee and friend Donald H. Fritts passed away at his home in Bakersfield on Thursday, May 4 ,2006. A former publisher of The Bakersfield Californian, Don had been ill with Huntington's disease for many years."

"Gentleman Publisher Dies" | Thursday, May 4 2006
The Bakersfield Californian | Thursday, May 4 2006
The Bakersfield Californian | Friday, May 5 2006
Don Fritts' Obituary

"Prejudice in a portrayal of Huntington's disease" - a review by Nancy S. Wexler and Michael D. Rawlins of Ian McEwan's novel Saturday. [.pdf version]

Architect Frank Gehry presented his design for a new Alzheimer's research center in Las Vegas - LAS VEGAS (AP) - Architect Frank Gehry presented his design for a new Alzheimer's research center in Las Vegas on Saturday, unveiling an uneven stack of blocks anchoring a swooping trellis made of Gehry's signature contorted steel. (Las Vegas Sun, 11 Feb 2006) - [.pdf version]

Architect Frank Gehry spoke at SfN about how his work progresses from ideas to finished buildings. (BrainWork, November/December 2006) - [.pdf version]

Architect Frank Gehry's plan for a retail, residential and entertainment complex: opportunities and challenges LOS ANGELES (AP) Grand Avenue Project (The New York Times, Sun, 1 Jan 2007) - [.pdf version]

Alden Blethen lived a full life despite ravages of disease  - When friends and family remember Alden "Buster" Blethen, they don't talk of the man who was bedridden by a debilitating disease; they talk of the man who lived life to the fullest, who bore no bitterness from the ravages of his disease.

Mr. Blethen died Thursday from Huntington's disease, an inherited neurological disorder. He was 55. ...

Academy Elects 225th Class of Fellows and Foreign Honorary Members  Class Includes Scholars, Scientists, Artists, Civic, Corporate and Philanthropic Leaders, Cambridge, MA, April 26, 2005 - The American Academy of Arts and Sciences today announced the election of 196 new Fellows and 17 new Foreign Honorary Members. The 213 men and women are leaders in scholarship, business, the arts, and public affairs. [ Full article in .PDF ]

Book Review: Prejudice in a portrayal of Huntingtonās disease  - "Saturday", Ian McEwan. Jonathan Cape, 2005. Pp 288. £17į99. ISBN 0-224-07299-4.  "McEwan sadly reinforces the stigma and stereotypes from which families with Huntingtonās disease suffer, and which make them hide both their inheritance and their destiny.” -- Nancy S Wexler, Michael D Rawlins, Vol 366 September 24, 2005  [ Full article in .PDF ]

Nancy Wexler Featured on NPRās All Things Considered: New York, New York May 16, 2004 “Reading Genes for Disease, Part 3: Huntington's Researcher's Work Led to Genetic Test and Family Dilemma

Cover story: Special report: The elixir of life - May 25, 2003 - TIMES ONLINE of London - These microscopic white dots are called RNA. We all possess them; they are part of the DNA puzzle unravelled by Crick and Watson 50 years ago. But only now has a chance experiment to produce a petunia with more colourful petals revealed their potential - the incredible power to eradicate genetic disease and even the scalpel. By John Cornwell

Huntington's Disease: Historical and Contemporary Connections - Winter 2003 (pg 24), P&S - The College of Physicians & Surgeons of Columbia University - In the 10 years that have passed since the discovery of the gene that causes Huntingtonās disease÷the degenerative neurological disorder characterized by cognitive, motor, and behavioral impairments÷ Columbia has remained in the vanguard.

Genes May Draw Your Road Map, but You Still Chart Your Course - February 25, 2003, NY Times Science - It's all in the genes." How many times have you heard that? Well, forget it. It's not true, at least not for a vast majority of serious health problems that beset people in this and other Western countries

How the Arms of the Helixes Are Poised to Serve - February 25, 2003, NY Times Science - Mary Nathan's life was saved, but Carlos Urrutia learned he faced a premature death. Bonnie Davis received the assurance she needed to have another child, but Amy Hefner got news that might keep her from having another. Ray Krone was freed after 10 years in prison for a crime he did not commit; Mack Reaves III was convicted of a crime he committed 10 years earlier.

Voices on DNA - February 25, 2003, NY Times Science - Researchers and others tell how DNA's discovery, and the decades of genetic research that followed, affected their work and lives.

A Revolution at 50; NANCY S. WEXLER - February 25, 2003, NY Times Science - She is a professor of neuropsychology at Columbia. Driven by Huntington's disease in her family, Dr. Wexler led the effort to identify the gene that causes it. She has never said whether she has been tested for the gene.

The Pioneers of Molecular Biology: Nancy Wexler - February 09, 2003, Time The DNA Revolution - At risk for Huntington's disease herself, this scientist has made unraveling its mysteries her life's work

Major Advances in Huntington's Disease Research Expected From Powerful Technology to Study Protein Structure - December 04, 2002 - The Hereditary Disease Foundation (HDF) and Structural GenomiX, Inc. (SGX) today announced a collaboration agreement to investigate the structure of huntingtin, the protein responsible for Huntingtonās disease.

Yale Scientist Named Dean of Graduate School of Arts and Sciences - Susan Hockfield, a member of our Scientific Advisory Board, has been named dean of the Yale Graduate School of Arts and Sciences.

The Nobel Assembly at Karolinska Institutet has today decided to award The Nobel Prize in Physiology or Medicine for 2002 jointly to: - October 07, 2002 - Sydney Brenner, H. Robert Horvitz and John E. Sulston for their discoveries concerning "genetic regulation of organ development and programmed cell death."

Gillian Bates, M.Sc, Ph.D - September 7, 2001 - Former Hereditary Disease Foundation, Science Advisory Board Memeber, Gillian Bates, M.Sc, Ph.D was recently awarded the K.J. Zulch-Prize by the Max-Planck-Society for her research on Huntington's disease.

WFN unanimously passes articles on Human Rights and Biomedicine - September 6, 2001 - Participants at the 19th International Meeting of the World Federation of Neurology Research Group on Huntington's Disease, voted unanimously to pass several articles from the Council of Europe's Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine.

H. Robert Horvitz, Ph.D., - August 30, 2001 - Hereditary Disease Foundation, Science Advisory Board Memeber, H. Robert Horvitz, Ph.D., Receives The Bristol-Myers Squibb Award For Distinguished Achievement In Neuroscience Research.

The Hereditary Disease Foundation Partners with Aurora Biosciences for Therapeutic Drug Discovery. September 12, 2000. Read this PDF file about some questions and answers.

A Tale of Pain and Hope on Lake Maracaibo. Business Week Article, May 29, 2000. Details HD in Venezuela & HDF President Nancy Wexler's HD Project. [.PDF]

In Memoriam, John B. Penney, Jr. M.D. - January 31, 1999


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