Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD 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 ...
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Our Lived Experience (Panel from Help 4 HD Symposium)
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Our Lived Experience (Panel from Help 4 HD Symposium)Help4HD による
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Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters: Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You …
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HD Uncut: Thoughts from StrasbourgHelp4HD による
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End of Life: The Caregiver Perspective, Part 2
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End of Life: The Caregiver Perspective, Part 2Help4HD による
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UF Fixel Institute for HD Patients with Dr. Nick McFarland
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For more information about the UF Fixel Institute located in Gainesville, FL, please click here.Help4HD による
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HDYO Ambassador: MollyHelp4HD による
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To read the blog post BJ Viau wrote, please click hereHelp4HD による
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HDYO Ambassador GemmaHelp4HD による
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"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.Help4HD による
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End of Life: The Caregiver PerspectiveHelp4HD による
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We are Stronger TogetherHelp4HD による
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Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.Help4HD による
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Please visit hdgenetics.com for more information.Help4HD による
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HD Uncut with GinaHelp4HD による
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As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.Help4HD による
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Recap of my visit with UniQure for HD Awareness MonthHelp4HD による
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Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient grou…
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For more information about the HDYO Ambassadors program, please visit www.hdyo.org.Help4HD による
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What I learned at the World Orphan Drug Congress
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I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to LiveHelp4HD による
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Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. Y…
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Using Optical Tweezers in HD with Dr. Piere Rodriguez-Aliaga
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Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with…
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Cognitive Symptoms & Patient-Reported Outcomes with Dr. Jennifer Petrillo Billet
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Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evalu…
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Please visit www.hdyo.org for more informationHelp4HD による
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Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.Help4HD による
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Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!Help4HD による
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HDYO Ambassadors Series: Ep 1. with RobynHelp4HD による
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Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.Help4HD による
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Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their k…
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To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We ExistHelp4HD による
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Please visit the Hereditary Disease Foundation website to find out more information.Help4HD による
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If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click HereHelp4HD による
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HD Uncut, Ep. 11, with Dina De SousaHelp4HD による
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Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.Help4HD による
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Greater than HD in 2024Help4HD による
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HD Uncut, Ep. 10 with LeahHelp4HD による
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If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearienHelp4HD による
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If you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at anna@help4hd.orgHelp4HD による
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For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgHelp4HD による
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Coping During the Holidays with Melissa W.Help4HD による
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Lauren shares her feelings about the holidays and her recent birthday.Help4HD による
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Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.Help4HD による
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HD Community Advisory Board with Jenna Heilman
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If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org.Help4HD による
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Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Develo…
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Chris Brown joins me to talk about the age of onset in HDHelp4HD による
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Sarina SmithHelp4HD による
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If you'd like to join Kayla's Facebook group, please click here.Help4HD による
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Lauren's Experience with SurveyorHelp4HD による
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"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
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"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonellHelp4HD による
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Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HDHelp4HD による
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Kelly Clark is a caregiver for her husband. They are currently using photobiomodulation therapy on her husband to help with his HD. For more information about the research being done, please visit Vielight at vielight.com Please add Kelly as a referral if you purchase from Vielight! Kelly Clark. – kanclark@gmail.com For the PowerPoint Kelly was sho…
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