Pope Francis champions Huntington's disease, by HDF President Nancy Wexler

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"From the moment I first visited Venezuela in 1979, which has the world’s highest prevalence of Huntington’s disease, I was moved and motivated to help and improve the lives of patients with Huntington’s disease, their families and their communities." 

Read full letter.

Washington Post features HDF President Nancy Wexler and CEO Meghan Donaldson

Pope Francis caresses a sick woman during an audience with Huntington's disease sufferers and their families on May 18, 2017. (Andrew Medichini/AP)

“I'm ecstatic,” said Nancy Wexler, who in 1993 identified the mutation. “Huntington's is horrible, one of the worst diseases known to mankind, and certain death. . . . We know it’s a bad gene, making a bad protein, that makes people sick, that kills your brain cells. Anything that could impact that, we knew that that could be a cure.”

Read the full story here.

Biggest news in Huntington's disease research since the identification of the HD gene!

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The Hereditary Disease Foundation congratulates Dr. Sarah Tabrizi, director of the University College London's Huntington Centre and the global lead investigator on the study, and her team on their breakthrough discovery. Congratulations also to C. Frank Bennett, senior vice president of research at Ionis Pharmaceuticals and longtime Scientific Advisory Board of the Hereditary Disease Foundation.

To read about this clinical trial, visit http://www.bbc.com/news/health-42308341.

Dr. Nancy Wexler, President of Hereditary Disease Foundation, said, "I'm ecstatic to see these promising positive results! If this therapy works to prevent or reverse HD, for the first time we will have something to immediately give people when they have a genetic test and discover that they are destined to die in the most catastrophic way."

This extraordinary and exciting breakthrough brings hope to the thousands of Huntington's disease patients and families worl dwide. This study will have an amazing impact on the HD community!

On November 6, the Hereditary Disease Foundation held a Symposium and Gala to launch our 50th Anniversary celebration. Sarah Tabrizi presented at the Symposium the latest from the "first in human" drug trial which "silences" - or turns down - the HD gene. Sarah also is the recipient of the Hereditary Disease Foundation's 2017 Leslie Gehry Brenner Prize for Innovation in Science for her research to discover treatments to prevent or reverse HD. We couldn't be prouder!

Sarah Tabrizi and Frank Bennett have been a part of the Hereditary Disease Foundation research family for many years. We are thrilled to see this research advance to such a remarkable point! A cure for the Huntington's disease is indeed within our reach.

Sarah Tabrizi's presentation about the Ionis clinical trial, November 6, 2017

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Sarah Tabrizi presented the latest from the “first in human” drug trial which “silences” – or turns down – the HD gene at the Hereditary Disease Foundation's 50th Anniversary Symposium and Gala on November 6, 2017.

Watch her presentation here.

Sarah also received the 2018 Leslie Gehry Brenner Prize for Innovation in Science that evening.

GIVE THE GIFT OF CURES!

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With your support, the Hereditary Disease Foundation is able to fund innovative research towards curing Huntington's disease and impacting other brain disorders. The Foundation focuses on curing Huntington's disease, not only because of its devastating consequences to individuals and families with the disease, but because it is a model for curing other brain disorders like Parkinson's, Alzheimer's and Lou Gehrig's (ALS) diseases. 

Make a gift to the HDF in honor of a family member, a friend, a special event or just because! Learn about the different ways you can give to us.

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Happy holiday season!

Sarah Tabrizi receives 2017 Leslie Gehry Brenner prize for Innovation in Science

Professor Sarah Tabrizi wins international award for hereditary disease research

9 November 2017

Professor Sarah Tabrizi, director of the UCL Huntington’s Disease Centre at the UCL Institute of Neurology, has received the 2017 International Leslie Gehry Brenner prize for Innovation in Science.

Awarded by the Hereditary Disease Foundation on November 6 in New York, the $100,000 prize is in recognition of “her outstanding contributions to innovative clinical trials and to clinical care for people with Huntington's disease and their families.”

The award committee commended Professor Tabrizi for her work advancing the mechanistic understanding of Huntington’s disease pathobiology and developing novel therapies for Huntington’s disease (HD).

The prize was donated by architect Frank Gehry and his family, in memory of his daughter Leslie who died of cancer in 2008.

Professor Tabrizi co-founded the UCL Huntington’s Disease Centre in 2016 with Professor Gillian Bates, who won the Leslie Gehry Brenner Award in 2012 for developing the first mouse model of HD.

Professor Tabrizi’s research programme seeks to discover effective disease-modifying treatments that prevent or reverse the neurodegenerative process in HD. She leads a research group that follows two distinct but complementary approaches: basic science focusing on cellular mechanisms of neurodegeneration, and a programme to translate those findings into treatments and cures. She and her collaborators have developed means of identifying and measuring the HD gene and its protein in human blood and cerebrospinal fluid (CSF).

She leads a team at the UCL Huntington’s Disease Centre that is currently conducting a trial of a novel ‘gene silencing’ treatment for HD, sponsored by Ionis Pharmaceuticals. It’s the world’s first trial in patients to slow, stop, prevent or reverse HD, using a method that targets the root cause of the disease, a gene producing a protein called huntingtin.

She has published over 250 peer-reviewed publications to date, she was elected a fellow of the UK Academy of Medical Sciences in 2014, and in 2010 helped set up the UK All-Party Parliamentary Group for HD.

“I am honoured to receive this award and I am deeply grateful to the Hereditary Disease Foundation and to the Gehry family for their support of research that seeks to improve the lives of people with hereditary diseases such as Huntington’s disease. The award is a testament to the tireless efforts of the UCL HD Centre team and our collaborators as we seek to lead world-class research from bench to bedside. Every year we are getting closer to identifying treatments that could slow down the disease process, and ways to prevent or delay disease onset in HD gene carriers” Professor Sarah Tabrizi

“Congratulations to Sarah on this major achievement. We are proud to host the UCL HD Centre at the UCL Institute of Neurology, Queen Square. It is the largest and most productive clinically-focused HD research group in the UK, and is at the forefront of neurodegenerative disease research and has real potential to transform people’s lives.” Professor Michael Hanna, Director of the UCL Institute of Neurology

“We are thrilled to present the Leslie Gehry Brenner Prize to Sarah Tabrizi. Professor Tabrizi has channelled her passion for scientific research into discovering ways to prevent or reverse Huntington's Disease. We thank her and her superb global team for their extraordinary work.” Professor Nancy Wexler, President of the Hereditary Disease Foundation

PRESS ADVISORY: Hereditary Disease Foundation Announces 2017 Leslie Gehry Brenner Prize for Innovation in Science at Symposium and Gala Dinner in New York - A Celebration of 50 Years of Discovery

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The Hereditary Disease Foundation will announce the recipient of the 2017 Leslie Gehry Brenner Prize for Innovation in Science at its 50th Anniversary Symposium and Gala on Monday, November 6, 2017, at the Metropolitan Club in New York City.  Symposium at 6pm, Reception at 7pm, Dinner/Awards Ceremony at 8 p.m.

WHO:  Keynote Address

Francis S. Collins, MD, PhD, Director of the National Institutes of Health

Speakers

Jang-Ho J. Cha, MD, PhD, Novartis Institutes for BioMedical Research

Sarah J. Tabrizi, FRCP, PhD, FMedSci, University College London Institute of Neurology

WHAT:  A Celebration of 50 Years of Discovery Symposium and Awards Dinner

WHEN:  Monday, November 6, 2017

WHERE:  The Metropolitan Club, One East 60th St., New York City

The Hereditary Disease Foundation facilitates collaborative and innovative scientific research to further the understanding of Huntington’s disease, a genetic disorder that strikes in early- to mid-adulthood, destroying brain cells, and bringing on severe and progressive declines in personality, cognitive ability, and mobility. As a disease caused by a mistake on a single gene, Huntington’s disease is an ideal model for other brain disorders. Research organized by the Foundation led to the discovery of the genetic marker for Huntington’s disease in 1983. The Foundation organized and funded a decade-long international collaboration of over 100 scientists who discovered the gene that causes Huntington’s in 1993. This work played an important role in the development of the Human Genome Project. For information visit http://www.hdfoundation.org.

PRESS CREDENTIALS REQUIRED

Contact: Myrna Manners, Manners Dotson Group

718.986.7255, mmanners@mannersdotson.com