Help 4 HD Live!
Katrina & Jamie talk about the Help 4 HD - HD Tool Kit - PT 1
Sep 17, 202616 min
Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here: Help4HD Database
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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, Lauren Holder, 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 an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc. **Please consult with your own physician for advice about any medical recommendation.
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Signup to Generate a PitchHelp 4 HD Live! is a business podcast hosted by Unknown Host, with 693 episodes on record and a Required Pod Score of 80. PitchCentric scores this show on Booking Probability, Listen Score, and live audience signals refreshed every 24 hours.
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Help 4 HD Live!
Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here: Help4HD Database
Help 4 HD Live!
Nancy and Alice are sisters, authors, scholars, and longtime members of the Huntington’s disease community. Their mother, Leonore Wexler, was diagnosed with Huntington’s disease in the late 1960s, at a time when very little was understood about the disease and families affected by HD often faced tremendous stigma and isolation. That diagnosis would profoundly shape both of their lives—but in very different and equally important ways. Dr. Nancy Wexler is a pioneering geneticist and one of the most influential figures in the history of Huntington’s disease research. She played a central role in the international research effort in Venezuela that ultimately helped scientists locate the Huntington’s disease gene on chromosome 4, paving the way for the identification of the gene itself in 1993. She has spent decades advancing HD research, advocating for families, and helping transform our understanding of the disease. Dr. Alice Wexler is a historian, author, and scholar whose work has explored the human side of that same scientific story—the history of Huntington’s disease, the experiences of families living with genetic risk, and the complicated questions surrounding predictive testing, identity, stigma, and inheritance. She is the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research and The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease. Together, Nancy and Alice offer something truly unique: two perspectives on the same family history—one that helped change the course of Huntington’s disease science and, at the same time, tells a deeply human story about what it means to live in the shadow of an inherited disease. You can purchase Nancy's book here: https://hdfoundation.org/nancy-wexler-memoir/
Help 4 HD Live!
Social Worker Spotlight with Jamie Holloway Traveling Tips & Tricks Host: Katrina Hamel #HuntingtonsDisease #HD #SocialWorkerSpotlight #Help4HD #Help4HDLive #Travel
Help 4 HD Live!
How are Huntington's disease clinics doing when it comes to the patient experience? On this episode of Help 4 HD Live, I'm joined by Sarina Smith of HD-PACE to share an update on our Clinical Patient Experience Survey—and we need your help! We're incredibly close to reaching 100 responses from people across the U.S. HD community. Every response helps us better understand what's working, where improvements are needed, and how we can use real patient experiences to advocate for better care. If you've been seen at any HD clinic in the United States or you are a support person who takes a loved one to an HD clinic, your voice matters. Please visit hdpace.org for more information! You can also access the survey here .
Help 4 HD Live!
Today, Roche announced they will be ending two of their programs for #HuntingtonsDisease . Dr. Rachel Harding of HDBuzz will be joining Lauren to talk about this and what it means for the HD community.
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