Health topics and news from McFarland Clinic in Central Iowa. #ExtraordinaryCare #EveryDay
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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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Breaking Down Barriers: A Conversation Around Access with HDYO
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Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceuti…
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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)Por Help4HD
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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 StrasbourgPor Help4HD
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End of Life: The Caregiver Perspective, Part 2
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End of Life: The Caregiver Perspective, Part 2Por Help4HD
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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.Por Help4HD
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HDYO Ambassador: MollyPor Help4HD
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To read the blog post BJ Viau wrote, please click herePor Help4HD
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HDYO Ambassador GemmaPor Help4HD
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HD Uncut: Being Gene-Positive & a Scientist
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"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.Por Help4HD
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End of Life: The Caregiver Perspective
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End of Life: The Caregiver PerspectivePor Help4HD
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We are Stronger TogetherPor Help4HD
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Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.Por Help4HD
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HD Genetics & Clinical Trials with BJ Viau
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Please visit hdgenetics.com for more information.Por Help4HD
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HD Uncut with GinaPor Help4HD
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HD Awareness Month Wrap-up with Judy Bradley
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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.Por Help4HD
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Recap of my visit with UniQure for HD Awareness MonthPor Help4HD
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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.Por Help4HD
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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 LivePor Help4HD
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HD Uncut with Meredith Patterson
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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 informationPor Help4HD
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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.Por Help4HD
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Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!Por Help4HD
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HDYO Ambassadors Series: Ep 1. with Robyn
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HDYO Ambassadors Series: Ep 1. with RobynPor Help4HD
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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.Por Help4HD
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Layers of Love with Dave, Susie and Erika
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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 ExistPor Help4HD
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DNA Repair in HD with Dr. Joseph Hamilton
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Please visit the Hereditary Disease Foundation website to find out more information.Por Help4HD
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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 HerePor Help4HD
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HD Uncut, Ep. 11, with Dina De SousaPor Help4HD
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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.Por Help4HD
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Greater than HD in 2024Por Help4HD
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HD Uncut, Ep. 10 with LeahPor Help4HD
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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 - @christydearienPor Help4HD
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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.orgPor Help4HD
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For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgPor Help4HD
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Coping During the Holidays with Melissa W.
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Coping During the Holidays with Melissa W.Por Help4HD
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Lauren shares her feelings about the holidays and her recent birthday.Por Help4HD
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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.Por Help4HD
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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.Por Help4HD
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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 HDPor Help4HD
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Sarina SmithPor Help4HD
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If you'd like to join Kayla's Facebook group, please click here.Por Help4HD
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Lauren's Experience with SurveyorPor Help4HD
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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 McDonellPor Help4HD
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Is It Greener on the Other Side?
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Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HDPor Help4HD
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