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

  • Family Matters

    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

    HD Awareness Month 2021 Kickoff

    06/05/2021 Duração: 28min

    HD Awareness Month 2021 Kickoff

  • Sex Differences in Huntingtons Disease

    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

    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

    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

    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

    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

    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

    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

    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/  

  • Tracing your HD Ancestry

    Tracing your HD Ancestry

    25/02/2021 Duração: 37min

    Tracing your HD Ancestry

  • Sharing About Caring with Carlos

    Sharing About Caring with Carlos

    17/02/2021 Duração: 23min

    Carlos Briceño has started a new podcast that focuses on the caregiver journey and having a healthy emotional outlet¨ through creativity. This includes original poems, music and more. You can learn more about the podcast and submit content at: https://sharingaboutcaringpodcast.wordpress.com/ You can also read Carlos' column about caregiving at: https://huntingtonsdiseasenews.com/category/a-family-tradition-a-column-by-carlos-briceno/  

  • KINECT-HD Update

    KINECT-HD Update

    10/02/2021 Duração: 23min

    Let's talk about Kinect-HD trial with Dr. Erin Furr-Stimming and Dr. Dan Claasen

  • HD Mythbusters - Treatments for HD

    HD Mythbusters - Treatments for HD

    27/01/2021 Duração: 30min

    Dr. Tamara Maiuri works as a Research Associate in Dr. Ray Truant’s lab at McMaster University in Hamilton, Canada, where her research is focused on the role of the huntingtin protein in DNA repair. Tam is also an active member of the HD community who regularly participates in fundraisers, education events, and knowledge translation through HDBuzz.net.

  • A COVID Story with the Sweets

    A COVID Story with the Sweets

    27/01/2021 Duração: 27min

    Tune in to hear about Nancy Sweets horrible situation with a rehab facility that was supposed to be caring for her son living with HD and tested positive for COVID.

  • HD Mythbusters - Passing on HD

    HD Mythbusters - Passing on HD

    20/01/2021 Duração: 25min

    HD Mythbusters - Passing on HD with Mara Sifry-Platt

  • HD Mythbusters - Stages of HD

    HD Mythbusters - Stages of HD

    13/01/2021 Duração: 26min

    Katie Jackson and Dr. Sam Frank talk about the stages of Huntington's Disease.

  • HD Mythbusters - CAG in HD

    HD Mythbusters - CAG in HD

    06/01/2021 Duração: 45min

    First episode of the "HD Mythbusters" series with Dr. Thomas Bird. We discuss "CAG" in HD.

  • Physical therapy in HD

    Physical therapy in HD

    23/12/2020 Duração: 24min

    Physical therapy in HD

  • LoQus23

    LoQus23

    17/12/2020 Duração: 42min

    Dr. David Reynolds and Dr. Caroline Benn of LoQus23 share what they are doing in regards to HD research. This show was done on Zoom. You can see the recording soon.

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