Barry H. Evenchick, Partner at Pashman Stein Walder Hayden, Elected to Board of the Hereditary Disease Foundation

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NEW YORK (July 18, 2019) – The Hereditary Disease Foundation (HDF), which funds scientific research to find treatments and cures for Huntington’s disease, announced that Barry H. Evenchick, has been elected to its Board of Directors. 

Nancy Wexler, President of HDF, said, “We are thrilled that Barry is joining our Board. His wisdom and guidance will be invaluable as we continue our work to fund innovative research that is advancing our understanding of Huntington’s disease and bringing hope to families who are affected by this devastating genetic disorder.”

Mr. Evenchick is a partner at the New Jersey-based law firm Pashman Stein Walder Hayden where his practice focuses on litigation. He is a former prosecutor, having served as chief of the appellate section of the Essex County Prosecutor’s Office and as the first chief of the appellate section of the New Jersey Division of Criminal Justice. He also served for 12 years as the municipal attorney of the Township of Livingston and for six years as a commissioner of the New Jersey State Commission of Investigation. He is an adjunct faculty member of Rutgers Law School in Newark and serves as vice-chair of the editorial board of the New Jersey Law Journal.

“I am honored and proud to be elected to the Board of the Hereditary Disease Foundation,” Mr. Evenchick said. “I look forward to working with my fellow Board members as we further our efforts to support research that is making a difference in the lives of Huntington’s disease patients and their families.”

About the Hereditary Disease Foundation

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. HDF 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 more information, visit www.hdfoundation.org.

About Pashman Stein Walder Hayden

Pashman Stein Walder Hayden is a full-service business law firm offering a wide range of corporate and personal legal services. Headquartered in Hackensack, New Jersey with offices in Monmouth County, New Jersey, and Westchester County, New York, the firm serves a diverse client base including regional Fortune 500 companies, emerging growth entities, and individuals, as well as out-of-state corporate counsel, law firms, and individuals with interests in the New York metropolitan region. Named a Regional Powerhouse in 2018 by Law360 and awarded Appellate Litigation Department of the Year (2018) by the New Jersey Law Journal and recognized by Chambers USA 2018 as one of the top law firms in New Jersey in the fields of General Commercial Litigation and White-Collar Crime & Government Investigations, Pashman Stein and its lawyers continue to be recognized for sophisticated legal skills and experience. 

For more information, visit www.pashmanstein.com.

Contact: Myrna Manners, Manners Dotson Group, mmanners@mannersdotson.com, 718-986-7255 (Mobile)

News from the Hereditary Disease Foundation - Huntington's Disease Awareness Month

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May is Huntington's Disease Awareness Month. But every month, we aim to increase awareness about the impact of HD and emphasize how research is making a difference. And every moment is a good one to celebrate HD patients and their families. Each has a unique story of heartbreak, resilience, courage, hope, love, and families coming together under the most challenging of circumstances. Read here to be inspired by their stories.

Breaking News: Exciting Results of HDF-Supported Research Published in New England Journal of Medicine

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“We are ecstatic by this very encouraging news!” exclaims Hereditary Disease Foundation (HDF) President Nancy Wexler.

The first human trial, which uses a novel approach to lower the level of the devastating huntingtin protein in the nervous system, is a success. The drug targeting the cause of Huntington’s disease proved safe and well tolerated.

The trial was led by Sarah Tabrizi, HDF Scientific Advisory Board Member, recipient of the 2017 Leslie Gehry Brenner Prize for Innovation in Science and Director of the University College of London (UCL) Huntington’s Disease Center. The study was sponsored by Ionis Pharmaceuticals, where HDF Scientific Advisory Board Member and 2018 Leslie Gehry Brenner Prize recipient C. Frank Bennett is senior vice president for research.

The top-level results were announced in December 2017, and now the full set of results of this breakthrough HDF-supported research are published in the prestigious New England Journal of Medicine accompanied by an editorial by Nancy Wexler and Kenneth Fischbeck of the National Institutes of Health (NIH) and HDF Scientific Advisory Board member. 

Nancy Wexler said, “We are excited that we will now be moving forward to a global Phase 3 trial sponsored by F. Hoffman-LaRoche, which licensed the medicine. HDF has supported the preclinical development of this promising therapy for the past decade.”

HDF-supported research is yielding great results!

Read the article online or click here for the PDF.

Read the editorial online or click here for the PDF.

View the supplementary appendix online or click here for the PDF.

Nancy Wexler Receives Prestigious 2019 Double Helix Medal from Cold Spring Harbor Laboratory

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Nancy Wexler, HDF President, adds yet another incredibly well deserved honor to her long list of prestigious accolades! She was chosen to receive the 2019 Double Helix Medal for her extraordinary work leading to the discovery of the location of the gene that causes Huntington’s disease.

Learn more here about this wonderful honor!

Congratulations to Nancy for this wonderful recognition of your work to find treatments and cures for HD!!!

ON PBS NOW – “WOODY GUTHRIE ALL-STAR TRIBUTE CONCERT 1970” - Long-lost footage from concert benefiting what is now the HDF

Left to right: Arlo Guthrie, Joan Baez, Country Joe McDonald. Credit: Courtesy Hereditary Disease Foundation

Left to right: Arlo Guthrie, Joan Baez, Country Joe McDonald. Credit: Courtesy Hereditary Disease Foundation

We are thrilled to let you know that PBS stations around the country are airing the Woody Guthrie All Star Tribute Concert. This concert at the Hollywood Bowl was the very first fundraiser for what is now Hereditary Disease Foundation. You’ll see never before seen footage of this rare and historic event from 1970. 

As an added bonus, HDF will receive a portion of the proceeds from the sale of each DVD of this historic concert. Purchase here.

Woody Guthrie, America’s greatest folk singer, died of Huntington’s disease several years before this tribute concert was filmed. Over the past 50 years, we have made many significant discoveries about HD, and we are now celebrating the first gene therapy which promises to slow or even reverse HD in its tracks!

Woody Guthrie continues to inspire us. His music and memory live on forever. Don’t miss this amazing concert. Check your local listings for airtimes in your area!!!

Learn more about this exciting event on PBS . Read PBS’s press release.

“I come from an HD family.” Kate Miner, HDF Gala 2018

Kate Miner, of the band Miner, spoke at our October 22, 2018 Gala: “I come from an HD family. We’ve had Huntington's disease in our family’s genetic makeup our entire lives but we didn’t know about it until the summer of 2014. That was the year my mom’s sister Diane was diagnosed. This diagnosis had implications for my mom, my sisters and me…We were totally different people as we were trying to come to terms with this new reality…we felt lost at sea, we were in a place of uncertainty…we wanted to find a way back to yesterday.”

Watch her full remarks.

Listen to Kate and her husband Justin – “The Miners” - perform.

"We are on the cusp of groundbreaking discoveries!" Karen Newman, HDF Gala 2018

At the Hereditary DIsease Foundation October 22, 2018 Gala, Karen Newman, member of our Board of Directors and Gala Chair, spoke about the work of the Hereditary Disease Foundation: "This evening we celebrate the Hereditary Disease Foundation, an organization that has pioneered scientific research and discovery for 50 years. As a member of a family that has been affected by Huntington's disease, I know the profound impact that this foundation’s work has had on so many lives.”

Watch her full remarks.

Frank Gehry awards C. Frank Bennett the 2019 Leslie Gehry Brenner Prize for Innovation in Science, October 22, 2018

On October 22, 2018, Frank Gehry, member of the Hereditary Disease Foundation Board of Directors and Founding Trustee, presented the 2019 Leslie Gehry Brenner Prize for Innovation in Science to C. Frank Bennett of Ionis Pharmaceuticals. “A few years ago my young daughter passed away from ovarian cancer,” said Mr. Gehry, “We created a fund in her name – Leslie Gehry Brenner – and we give that award every year. The idea was to give it without any strings and see what happens. I love that idea – the freedom that it implies.”

Watch the full Award presentation.

The Magic of New Beginnings - News from the Hereditary Disease Foundation

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We’re excited about the beginning of a New Year and the promise 2019 holds for dramatic advances in HD research. Great things are happening…brilliant minds are at work. With your support, we will continue to push until we push HD out of the normal lifespan. Momentum begins with a moment. This is our magical moment…together we will make it happen for our families and for the future.

Read more in our January 2019 Newsletter.

"A new era for treating neurological diseases" HDF 2018 Symposium, Dr. C. Frank Bennett, Ionis

"A new era for treating neurological diseases" HDF 2018 Symposium, Dr. C. Frank Bennett, Ionis

The mood within the room was electric with excitement and hope as Dr. C. Frank Bennett, senior vice president for research and franchise leader for neurological programs at Ionis Pharmaceuticals, took the podium at the Hereditary Disease Foundation October 22, 2018 Gala. He gave a mesmerizing talk

about his work developing antisense therapeutics for neuromuscular and neurological diseases. His pioneering work brought us the world’s first approved treatment for spinal muscular atrophy (SMA). In 2005, Frank started a program to develop antisense therapies for Huntington’s disease. IONIS-HTTrx is designed to treat patients with HD and is the first and only drug to demonstrate reduction of the neurotoxic abnormal huntingtin protein, the underlying cause of HD, in patients. Ionis is partnering with Roche for phase 3 of the trial, which is set to begin in the U.S. and abroad soon!! This is a groundbreaking advance for the field of HD!

Click here to watch in full to Dr. Bennett’s October 22, 2018 Symposium Presentation.

BIG NEWS: Roche/Genentech Announce Site Locations for GENERATION HD1 Trial of RG6042

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Roche/Genentech announce the locations, including 20 sites in the U.S. and 6 in Canada, for their phase 3 study - called GENERATION HD1 - to test efficacy of the huntingtin-lowering therapy RG6042.

This study is open and currently recruiting! This will be a 2-year study in people with early diagnosed HD, involving monthly spinal injections to deliver RG6042 or a placebo, as well as clinical tests and scans to understand the effect of the drug on HD symptoms. Around 660 people age 25-65 will be recruited at approximately 90 sites across the world.

Read the full press release.