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Dr. Wild is a Professor of Neurology at University College London, a Consultant Neurologist at the National Hospital for Neurology and Neurosurgery in London’s Queen Square, and Associate Director of UCL Huntington’s Disease Centre. He runs clinics in general neurology, neurogenetic movement disorders and Huntington’s disease. He leads a team of researchers aiming to accelerate the development of new therapies to make a real difference for people impacted by Huntington’s disease. Dr. Wild believes that “Scientists have a duty to make their work accessible and understandable to the people who need it most.” So in 2010, I co-founded HDBuzz, an online source of reliable, impartial, easy-to-understand information about HD research. HDBuzz is now the world’s foremost HD research news source. In recognition of this, he was awarded the 2012 Michael Wright Community Leadership Award by the Huntington Society of Canada and the 2014 Research Award by the Huntington’s Disease Society of America (which is where I first

Toronto author and public speaker, Erin Paterson, tested gene positive for Huntington’s Disease (HD) in 2006. Shortly after she started suffering from depression, then received more crushing news, she was infertile.  Despite those diagnoses she was determined to have a family and live a joyful life. Her stories have appeared on over a dozen sites including KevinMD, TheMighty and HuntingtonsDiseaseNews.com. She is the author of, All Good Things:  A Story About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness You can visit Erin's website at: https://www.erinpaterson.com/ You can get the book on Amazon here.

Lisa Mymo is responsible for the strategy and execution of AllianceRx Walgreens Prime’s specialized programs, services and offerings.  Lisa and her teams are focused on best in class performance in the areas manufacturer and HUB services, patient access, patient services, financial services, implementation, pharma solutions and pharmacovigilance and REMS compliance.  Lisa has 25 years working and leading in varied areas of the pharmacy industry, including pharmacy benefit management, biopharmaceutical account management and specialty pharmacy operations. Bryan Bloom is a director at TailorMed where he works with providers and pharmacies nationwide to remove financial barriers to care. Prior to TailorMed, Bryan was co-founder at Dunn Meadow Pharmacy where he developed and managed relationships with top medical institutions throughout the United States. Bryan is currently a member of the Board of Directors at Stupid Cancer, a leader in young adult cancer advocacy, research, and support. He also sits on the CX

Signs from above

Sophie St-Cyr, PhD of Children's Hospital of Philadelphia joins us to talk about the heart. Heart disease is the second cause of mortality from Huntington'sand patients present an increased incidence of heart failure and a smaller heart. This heart pathology will need solving to improve the longevity and quality of life of HD patients. Dr. St-Cyr will explore the contribution of two RNA-binding proteins (RBPs) in the HD-associated cardiac pathology. RBPs are responsible for regulating the RNA splicing of hundreds of genes, a phenomenon by which different proteins are produced from the same gene and serve different functions. CELF1 is responsible for heart splicing during development while MBNL1 does so in adulthood. Dr. St-Cyr hypothesizes that imbalance between these two RBPs is in part responsible for the HD heart pathology. To test this, she will identify all the RNA isoforms abnormally expressed in the heart in a HD mouse model and determine whether increasing MBNL1 expression ameliorates heart size and

Let's Be Candles

Londen Tabor Joins Help 4 HD

Bridging The Gap with Seth and BJ

Shelby Lentz talks about her new book.

Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America (HDSA), the largest public not-for-profit organization devoted to the fight against Huntington’s disease (HD). Since joining HDSA in 2009, she has led the expansion of the Society’s reach with new programs and initiatives to strengthen the web of support for the HD community, advocate for better access to care for those affected by the disease, improve physician understanding of HD, and support scientific exploration to bring new treatments to HD families. Ms. Vetter serves as Secretary of the International Huntington’s Association and is Treasurer of the Board of Directors of the American Brain Coalition. Additionally, she is an active member of the National Health Council and an editorial advisor to the Rare Disease Report. Before coming to HDSA, Ms. Vetter spent nearly 10 years leading the American Lung Association of New York where she advocated for families living with lung diseases, like lung cancer, asthma,

Christian Neri is a Research Director with a demonstrated history of working in the research industry. Skilled in genome science, computational biology, machine learning, translational research, R&D, target discovery, drug discovery, molecular diagnosis, clinical research, predictive analytics, business development, international business, and strategic sourcing. Skilled in Expert-Evaluation of Investment and Aid Opportunities. Main professional achievements cover advances in human genome analysis, neurodegenerative disease mechanisms, age-related diseases, systems modeling, and precision medicine initiatives. You can look at the Geomic research here: Geomic (inserm.fr) For more information about Geomic, here is a great article: Wearing Down of Protective System in Brain May Underlie Huntington’s (huntingtonsdiseasenews.com)

Seth, BJ and I talk about making changes in the HD community If you are interested in participating, please email Lauren Holder at [email protected]

Mike is a Neurology Registrar at the National Hospital for Neurology and Neurosurgery in London, and works on clinical trials in genetic diseases. He graduated from Cambridge in 2009 and completed a PhD in neurogenetics at UCL in 2018. His research with Prof Sarah Tabrizi uses stem cells and cutting edge genetics to understand neurological diseases and create new treatments. His focus is on repeat expansion diseases, such as Huntington's disease, and the role of DNA repair in repeat instability

Katie Jackson and others from Help 4 HD recently went to the National Sheriff's Association conference to educate law enforcement about HD and JHD. 

Daniel O’Reilly Ph.D. is currently a Post-Doctoral Associate at Khvorova Lab, RNA Therapeutics Institute,University of Massachusetts Medical School, Worcester, MA.  Previously a Ph.D. student in Prof. Masad Damha’s lab at McGill University in Montreal, Canada. Dan earned his MSc in Chemistry from the University of Southampton, UK.  It was there that he was first introduced to Nucleic Acid Chemistry in the laboratory of Prof. Jon Watts, working on the synthesis of peptide nucleic acid (PNA) monomers. Currently, his Ph.D. research focuses on utilizing chemical modifications to enhance the therapeutic effects of oligonucleotides by understanding nucleic acid structure. A research highlight has been probing the structural and chemical requirements for modification of the crRNA, in the CRISPR-Cas9 system. Creating a set of guidelines for chemical modification can lead to the development of novel highly modified crRNA for many applications. 

Planning a Memorial Service for during a pandemic

Francis O. Walker, MD, Professor of Neurology and Director of the Movement Disorder Clinic at Wake Forest University, has had significant involvement in clinical care and research in Huntington’s Disease for over 30 years. Following residency training in Neurology at the University of Iowa and fellowship training in Movement Disorders at the University of Michigan, he joined the faculty of Wake Forest University in 1984. HD has been his primary clinical and research interest throughout his career. Before retiring, he used to provide clinical care for 150 HD patients per year and was actively involved in several HD-related clinical trials.

Samantha Griffin is a member of the HD community. She was a caregiver for her mom since the age of 15.

Dr. Hugh Rickards and I delve into the topic of diagnosing HD and what it means.  "People with HD may consult with a psychiatrist, a neurologist and a psychologist for their diverse symptoms, but what they really need, says Hugh Rickards, FRCPsych, MD, is a “Huntingtonologist”: A doctor who has been trained in all the diverse manifestations of the disease, from motor control to emotional issues to cognitive changes. Rickards, who is consultant in neuropsychiatry and honorary professor at the University of Birmingham, says that the emotional and cognitive problems of HD tend to get underplayed by doctors and researchers—and it shouldn’t be that way. Rickards is a neuropsychiatrist at a large clinic for people with HD, and is also involved in recruiting people for research, including Enroll-HD. His own interest in the emotional landscape of HD has led him to spot similarities between HD and Asperger’s syndrome, the autism-like developmental disorder involving difficulty understanding other people’s feelings a