3960 Broadway, 6th Floor – New York, NY 10032
phone: 212.928.2121, fax: 212.928.2172 cures@hdfoundation.org
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.
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.
BIG SUCCESS!!!!
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
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 – www.hdfoundation.org.
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.
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.
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.
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!
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]
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).
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."
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, www.thelancet.com Vol 366
September 24, 2005
[ Full article in
.PDF ]
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
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
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.
