Help 4 Hd Live!

Informações:

Sinopsis

Welcome to Help4HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help4HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through a generous communications grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with you own physician for advice about any medical recommendation.

Episodios

  • Signs From Above

    23/09/2021 Duración: 14min

    Signs from above

  • The Heart in HD

    17/09/2021 Duración: 22min

    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

    09/09/2021 Duración: 28min

    Let's Be Candles

  • Londen Tabor Joins Help 4 HD

    02/09/2021 Duración: 27min

    Londen Tabor Joins Help 4 HD

  • Bridging The Gap with Seth and BJ

    26/08/2021 Duración: 22min

    Bridging The Gap with Seth and BJ

  • Brave Breanna

    20/08/2021 Duración: 14min

    Shelby Lentz talks about her new book.

  • PatientsLikeMe with Louise Vetter

    12/08/2021 Duración: 14min

    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,

  • The Geomic Approach

    06/08/2021 Duración: 23min

    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)

  • We Need An Army

    29/07/2021 Duración: 35min

    Seth, BJ and I talk about making changes in the HD community If you are interested in participating, please email Lauren Holder at lauren@help4hd.org

  • How FAN1 affects HD

    22/07/2021 Duración: 36min

    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

  • National Sheriff's Association with Katie Jackson

    15/07/2021 Duración: 25min

    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. 

  • The MSH3 Gene and HD

    08/07/2021 Duración: 22min

    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

    01/07/2021 Duración: 29min

    Planning a Memorial Service for during a pandemic

  • Dystonia with Dr. Walker

    24/06/2021 Duración: 24min

    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.

  • The New Normal

    16/06/2021 Duración: 30min

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

  • Diagnosing HD

    11/06/2021 Duración: 25min

    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

  • HD Parity Act

    03/06/2021 Duración: 19min

    For more information on how you can get involved, please visit www.hdsa.org/takeaction

  • Next Generation of HD Warriors

    27/05/2021 Duración: 19min

    Next Generation of HD Warriors

  • HEATED Task Force

    20/05/2021 Duración: 47min

    Professor Hugh Rickards is a self-avowed "HD-nerd".  He loves all things HD and has been running a service for people with HD in Birmingham, UK since 1997.  He's particularly interested in how people with HD view the world.  He founded the HEATED project (Huntington's Equal Access to Effective Drugs) in 2020 to identify any barriers to effective treatment for people with HD and to find ways to overcome them.  He is also the current chair of the Huntington's Disease Association (England and Wales).  In his spare time, he is a barista in the local park and plays the piano a lot.

  • Family Matters

    13/05/2021 Duración: 17min

    Ashley Clarke's bio: I am 28 years old and Huntington's first entered my life when i was around 14 years old, with the positive diagnosis of my dad. From the age of 17, i cared for my dad alongside my brother, attended school/ university, worked part-time and got involved with my local HD community. I was a volunteer, service user and board member over the years here in Northern Ireland. In 2016 i started the #Imnotdrunk Lifestyle Blog to raise awareness of Huntington's and share my story with the world. In 2018 i graduated from University and got to celebrate the day with my dad at his nursing home with a special party. This year (2021) i have signed a new contract to continue my work of 2 years with the Huntingtons Disease Association Northern Ireland. I have spent the past 10+ years living a life affected by Huntington's Disease, and it has made me the person i am today. I have friends around the world, attended many Huntingtons events, spoke publicly and turned Huntington's into a career i love!  Please

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