Congratulations to Beverly Davidson, HDF Scientific Advisory Board member and Researcher on being one of the 100 new members elected to the National Academy of Medicine (NAM) “for being on the forefront of developing innovative therapies and medicines for fatal, inherited brain disorders, which are engineered to either remove toxic proteins or replace missing proteins, and for improving or preventing disease progression.” Read the full list of new members here.
Congratulations to Nancy Wexler, HDF President, on receiving the Academy Medal for Distinguished Contributions in Biomedical Science!
"This award recognizes Dr. Wexler’s important scientific work in discovering the location of the gene that causes Huntington’s Disease and her ongoing work to find treatments for the disease. Her lifetime of dedication to the field has had a powerful impact on the science and ethics of neuro-genetic conditions."
Read full press release.
We’re less than two months away from a wonderful night Celebrating Discoveries in Neuroscience at our Symposium and Gala on Monday, October 28, at the Harvard Club in New York. For ticket info, call our offices at 212-928-2121, email email@example.com or visit the event page on our website.
HDF funds almost $1.5 million in 2019 in new grant and postdoctoral fellowship awards!
Read it in our latest Newsletter!
The Huntington Study Group is pleased to announce that the first episode of a brand new podcast series is now available to listeners. The goal of the podcast is to provide further in-depth insights about the people working on treatments that make a difference for those impacted by HD, and to share the interesting stories about their journey.
You can find it on Apple iTunes and Google Play by searching for HD Insights Podcast. Subscribe to the series and get the latest episode automatically delivered to your device.
To listen on Apple iTunes, go to https://podcasts.apple.com/us/podcast/hd-insights-podcast/id1478478065
To listen through Google Play, go to https://play.google.com/music/m/Ik55gxjmvmx67nsjkqz5qbyzxh4?t=HD_Insights_Podcast
Please join us on Monday, October 28 for the HDF Symposium and Dinner at the Harvard Club. Plan to share a fun evening with friends and family and hear from scientists who are at the forefront of finding treatments and cures for HD.
Book your tickets or support us online!
Gene Therapy Pioneer Beverly Davidson Leads the Way!
“It’s an exciting time be in science and see the marriage of different disciplines working together toward a common goal,” says Beverly L. Davidson, PhD, longtime member of the Hereditary Disease Foundation Scientific Advisory Board, 2015 recipient of the HDF’s Leslie Gehry Brenner Prize for Innovation in Science, and Arthur V. Meigs Chair in Pediatrics and Chief Scientific Strategy Officer at the Children’s Hospital of Philadelphia (CHOP) and Professor of Pathology and Laboratory Medicine at the University of Pennsylvania.
Read our current newsletter to find out WHY it’s an exciting time!
Read NIH Director Francis Collins’s blog post about novel ways to look at the brain. The highlighted research featured work by X. William Yang, UCLA, as part of the team who created this award-winning visual!
Ever since William was a postdoc, we've known he was bound for greatness! The Hereditary Disease Foundation has funded his stellar research for years! He is a longtime member of our Scientific Advisory Board and was awarded our Leslie Gehry Brenner Prize for Innovation in Science in 2014.
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, firstname.lastname@example.org, 718-986-7255 (Mobile)
Amazon Prime Day is coming up on on July 15 & 16. Make a difference while you shop - shop at smile.amazon.com/ch/23-7376197 and AmazonSmile donates to Hereditary Disease Foundation. Every penny counts!!!!
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.
“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!
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!!!
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!!!
Letter from Roche with important updates to the study design of the global Phase III GENERATION HD1 study to evaluate the efficacy and safety of the investigational medicine RG6042 for Huntington’s disease (HD).
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.
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.