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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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Pay What You Can: www.paywhatyoucanpeersupport.com/faqs Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline: If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org They also have a chat option and services…
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Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the …
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The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com. www.hunger…
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Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at [email protected] WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patien…
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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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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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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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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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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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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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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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