A new video is up showing the 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 families are uniquely staffed by their own family members. They need your support more than ever!
Together with Lundbeck, we have launched the Build Hope for HD campaign once again for the Casa Hogar for Huntington's disease. Each click on our website triggers a $10 donation from Lundbeck (up to a maximum of $50,000). Last year, we exceeded all our goals!!
Now we are half-way through the campaign. If you have clicked already, THANK YOU!!! Please send this message to your friends. If you have not clicked, please go to below, and select the "CLICK HERE" button.
Please watch this video to know why your HELP IS CRITICAL!!!, and to thank you for your continuing help and support!!
BUILD HOPE FOR HD
Support HD Research
and the HD Community!
Help us support a clinic vital to the Huntington's disease (HD) community!
The Casa Hogar Amor y Fe (House of Love and Hope) has served people with HD—an incurable genetic condition characterized by a triad of behavioral, cognitive, and motor symptoms1—for more than a decade. The families in Venezuela have made significant contributions to HD research and the lives of people living with HD globally, including aiding in the identification of the HD gene.
By clicking on the icon above, you can help Build Hope for HD by triggering a $10 donation from Lundbeck to the Casa Hogar (up to a maximum donation of $50,000). Every click helps the clinic provide invaluable care and support for the local HD community.
Thank you for joining us as we Build Hope for HD and support the Casa Hogar! Your participation makes a difference.
Sources
1. Marshall FJ, Clinical Features and Treatment of Huntington's Disease. Movement Disorders 2004; 1:589-596.
CHARLIE ROSE BRAIN SERIES –
FEATURING HUNTINGTON'S DISEASE AND ANNE YOUNG!!
If you missed this past Friday's airing (6/15) or it wasn't showing in your area, 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.
In addition to Charlie Rose and Eric Kandel (Columbia), guests include longtime member of the Hereditary Disease Foundation's Scientific Advisory Board and Board of Director Anne Young (Harvard), Stanley Prusiner (UCSF), Stanley Fahn (Columbia), Allen Goorin (Harvard), and Sam Posey (race car driver and artist).
PLEASE WATCH AND PASS AROUND THE VIEWING INFORMATION TO ALL WHO MIGHT BE INTERESTED!!
Read the Workshop Report from the Hereditary Disease Foundation Milton Wexler Interdisciplinary Workshop, December 2–3, 2011, "Designing Phase I/IIA Clinical Trials for Huntington's Disease." New York, NY. Prepared by Jill R. Crittenden, Ph.D.
On January 19, 2012, we held theater benefit to raise money to support the crucial research of the Hereditary Disease Foundation. This special event was astonishingly successful, raising over one quarter of a million dollars - $285,693!!!
BUILD HOPE FOR HD
Support HD Research
and the HD Community!
In Venezuela, an important clinic is at risk of closing its doors due to lack of funding.
Thank you all for your support.
This campaign was a great success!
As of October, 31, 2011,
the Campaign has ended.
The Casa Hogar Amor y Fe (House of Love and Hope) has served people with Huntington's disease (HD) in Venezuela for more than a decade. HD is an incurable genetic condition causing uncontrolled movement, behavioral changes and mental deterioration. The Venezuelan families have made significant contributions to HD research and the lives of people living with HD around the world by helping scientists identify the HD gene.
Thank you for joining us as we Build Hope for HD and support the Casa Hogar! Your participation makes a difference.
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.
IN MEMORIAM
We are saddened by the loss of Blake Edwards, a dear friend and longtime supporter of the Hereditary Disease Foundation.
“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.
Venezuelan families were featured in today’s Financial Times (August 18, 2010).
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.
Nancy Wexler’s visit to Venezuela is featured in the July 28, 2010 issue of Panorama, a newspaper from Maracaibo, Venezuela!
Read a wonderful and thoughtful review of Alice Wexler’s book, The Woman Who Walked into the Sea: Huntington's and the Making of a Genetic Disease
Review by Jesse Ballenger for the Bulletin of the History of Medicine, Volume 84, Number 2, Summer 2010, pp. 295-296 (Review), published by The Johns Hopkins University Press.
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.
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.
Aired 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! Click here for details to the story
We are grieved to mourn the loss of wonderful friends. They have been critical supporters of the Hereditary Disease Foundation family. They have played inspirational roles to the world as well.
They understood the importance, novelty, creativity and cutting-edge science and the concepts our scientists were undertaking. Their belief in us made it possible.
We are creating a newsletter to focus on their lives and these specials individuals.
Jennifer Jones Simon, Harry Lieberman and Max Palevsky, longtime friends and Founding Trustees of the Hereditary Disease Foundation—we all miss and love you!
Hereditary Disease Foundation 2010 Symposium and Dinner to benefit the Leslie Gehry Brenner Fund, created by the Hereditary Disease Foundation and founding Director and Vice President Frank Gehry in honor of his late daughter
Saturday, March 6, 2010
Casa Del Mar, Santa Monica, CA
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
The Hereditary Disease Foundation has supported this research from its first inception as an idea! We are very proud of the brilliant, dedicated, creative, persevering and all-around fabulous scientists who carried out this work with energy, enthusiasm, imagination and aplomb!
Congratulations, Joan, Leslie and William and all your magnificent and hard working group of investigators who put so much of their heart and soul into this work!!
Again, we are very proud!
Your Hereditary Disease Foundation family: Nancy Wexler, Carl Johnson,
Alice Wexler, The Scientific Advisory Board, The Board of Directors
We are all deeply saddened by the news of Dr. Ruth Kirschstein's death last evening. She died peacefully, after battling a long illness. Our hearts go out to Ruth's husband, Dr. Al Rabson, and their son, Dr. Arnold Rabson. for more details
Hereditary Disease Foundation Lifetime Director, lifetime friend and legendary actress, author and tabloid sensation Carrie Fisher is back on Broadway!!! Her new one-woman show, Wishful Drinking about "the highs and lows of life as a Hollywood princess" opens on Broadway at the Roundabout Theatre on September 22, 2009. for more details
It was recently announced that Alice Wexler’s book, “The Woman Who Walked Into the Sea,” has won the 2009 American Medical Writers Association Medical Book Award in the Healthcare Professionals (non-physician) category.
Michael Crichton (award-winning author of such classics as “Sphere,” “The Terminal Man,” “Jurassic Park,” and “Five Patients”) and Dr Timothy Johnson (medical editor for ABC News, founding editor of the Harvard Medical School Health Letter, and coauthor of “Let’s Talk”) are just 2 of the numerous authors who have received the prestigious AMWA Medical Book Award. The book awards were established more than 30 years ago by the American Medical Writers Association (AMWA) to recognize the best of the best in nonfictional and fictional medical writing.
Tuyomyo, a unique work of art by Frank Gehry, will be sold to create a million dollar fund to honor Frank's late daughter. Called the Leslie Gehry Brenner Award for Innovation in Science of the Hereditary Disease Foundation, this prize will make possible the best and most cutting edge research to find treatments and cures for genetic and brain disorders.
This piece opened to rave reviews at the Salone del Mobile in Milan, April 22-27 2009!!
For more information, call the Hereditary Disease Foundation at 212-543-5667.
JAMBO!!! THEY MADE IT!!!
Congratulations to the amazing Klimb for the Kure team! They summitted Mount Kilimanjaro around 2:30pm on Friday, the 13th and everyone made it! We're eagerly awaiting updates and photos upon their return home!!
For more information about the availability of Xenazine* (tetrabenazine) Tablets, please click here.
* Xenazine is a registered trademark of Cambridge Laboratories (Ireland) Limited.
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.
