Help 4 Hd Live!

Informações:

Sinopse

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.

Episódios

  • How FAN1 affects HD

    22/07/2021 Duração: 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 Duração: 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 Duração: 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 Duração: 29min

    Planning a Memorial Service for during a pandemic

  • Dystonia with Dr. Walker

    24/06/2021 Duração: 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 Duração: 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 Duração: 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 Duração: 19min

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

  • Next Generation of HD Warriors

    27/05/2021 Duração: 19min

    Next Generation of HD Warriors

  • HEATED Task Force

    20/05/2021 Duração: 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 Duração: 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

  • HD Awareness Month 2021 Kickoff

    06/05/2021 Duração: 28min

    HD Awareness Month 2021 Kickoff

  • Sex Differences in Huntington's Disease

    28/04/2021 Duração: 24min

    We talk with Dr. Natalia Rocha about research she's been working on, specifically "Sex Differences in Huntington's Disease: Evaluating the Enroll‐HD Database" Dr. Rocha joined The University of Texas Health Science Center at Houston as a Postdoctoral Research Fellow in the Department of Psychiatry and Behavioral Science in January 2016. Since then, she has been focused on the study of immune/inflammatory parameters associated with the pathophysiology of Huntington’s disease. Due to common interests in age-related disorders and neuroimmunology/inflammation associated with neurodegeneration, she joined Dr. Soto’s group and she is currently a member of the Mitchell Center For Alzheimer’s Disease & Brain Disorders. Dr. Rocha has received numerous awards and she has published more than 90 peer review papers, which have been cited more than 1,500 times (h-index = 22; i-10 index = 42; Google Scholar).

  • HD Reach Pathway Program

    21/04/2021 Duração: 34min

    For more information about the Pathway Program, please visit: https://www.hdreach.org/

  • Advance Care Planning

    16/04/2021 Duração: 21min

    Ben joined NHPCO in October 2020, bringing 30 years of leadership experience in educational, healthcare, and social service settings. Prior to joining the NHPCO senior leadership team, Ben was with Hospice of the Chesapeake where he served as President and Chief Executive Officer (2015-2020) and Chief Operating Officer (2013-2015). Prior to relocating to Maryland in 2013, he served as Chief Administrative Officer at San Diego Hospice and The Institute for Palliative Medicine. Ben has an extensive background in working with multidisciplinary clinical and management teams in a variety of educational and clinical settings. He holds a Master’s of Science in Counseling from San Diego State University, a Master’s of Education in Administrative Leadership from the University of San Diego, and a Bachelor of Sacred Theology and Philosophy from the Gregorian University in Rome, Italy. For more information about advance care planning, and to find the needed forms, please visit the National Hospice and Palliative Care

  • CHANGE HD

    07/04/2021 Duração: 29min

    If you are interested in the ChANGE HD study, you can find out more at our website: www.changehd.org or come see us on Facebook: @ChangeHDresearch You can also call our toll-free number: 1-866-514-0858 or send us an e-mail at: [email protected]  

  • Grief~The Stop of a Clinical Trial is a Loss

    30/03/2021 Duração: 22min

    Tune in to hear Katie Jackson, Katrina Hamel, and Lauren Holder talk about the news that came out of Genentech/Roche.

  • Adira Foundation

    17/03/2021 Duração: 37min

    For more information about Adira Foundation, please visit https://adirafoundation.org/about/letter-from-ceo/

  • Upcoming Virtual HD Events

    10/03/2021 Duração: 23min

    TODAY (3/10) is the LAST DAY to register for HIPE. You can register at this link: https://www.help4hd.org/events-1/help-4-hd-hipe-virtual-myth-busters/form HDYO's virtual event for young adults is March 13th and 14th. You can register for this event at this link: https://hdyocongress2021.vfairs.com/

  • Show Your Stripes

    03/03/2021 Duração: 19min

    Show Your Stripes for Rare Disease Day and all year long! Visit https://www.rarediseaseday.org for more information on Rare Disease Day Great resource for rare diseases: https://rarediseases.info.nih.gov/  

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