Help 4 Hd Live!
- Autor: Vários
- Narrador: Vários
- Editor: Podcast
- Duración: 147:43:00
- Mas informaciones
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Sinopsis
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.
Episodios
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Grief and Loss with Louanne Stanton
18/08/2022 Duración: 27minLouanne's bio: I stood at the foot of my husband's hospital bed... "Where is the book?" I asked the doctor. "What book?" he asked... "The book that tells me how to do this..." I was 33 years old and my 35 year old husband lay in the bed, just pronounced brain dead. It was the most devastating loss I had experienced in my life. Through this unexpected blow in life, I learned many lessons that I did not want to learn, but I did learn something profound. I wanted to help other people through the horribleness of grief. After doing much research on what type of certification I wanted to get in order to help people, I discovered the Grief Recovery Method website. I signed up for their certification program and became a Grief Recovery Specialist in 2016. The Grief Recovery Method is a practical, action based program that fit my beliefs and lifestyle. I have now helped over 150 people walk through the small and correct actions that allow people to come from pain to relief. I have heard over and over again how muc
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Community Talks, Receiving Disappointing Research News
10/08/2022 Duración: 35minKatie Jackson and I talk about the recent research announcements.
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FDA Listening Session Breakdown with Danielle
28/07/2022 Duración: 22minFDA Listening Session Breakdown with Danielle
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Informed Decisions with Gene Veritas
21/07/2022 Duración: 43minWe talk about Roe vs Wade being overturned and how that can affect the HD community
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HDBuzz Roundtable #1
14/07/2022 Duración: 39minFor more information about HDBuzz, please visit their website or twitter.
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PicnicHealth with Ashley Ferreira
07/07/2022 Duración: 14minFor more information on creating your PicnicHealth account, please reach out to Ashley at ashley.ferreira@picnichealth.com. Updated resources to come!
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Law Enforcement Education with Vicki Owen
30/06/2022 Duración: 15minLaw Enforcement Education with Vicki Owen. If you'd like to contact Vicki to get materials to hand out to your local law enforcement, you can email her at vicki@help4hd.org.
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Alzheimer's & Brain Awareness Month
24/06/2022 Duración: 17minAlzheimer's & Brain Awareness Month with Karen Owens
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Accelerate HD Update
27/05/2022 Duración: 23minSeth and BJ join me to talk about the upcoming FDA listening session
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Gait, Balance and Exercise in HD
19/05/2022 Duración: 27minDr. Anne Kloos received her physical therapy degree from the University of Wisconsin-Madison and her doctoral degree in biology/neuroscience from Cleveland State University. She is currently a Professor Clinical in the Physical Therapy Division at the Ohio State University (OSU) where she teaches adult neurorehabilitation and neuroscience courses. Her research is focused on balance and gait interventions in individuals with neurodegenerative diseases. She is a board-certified neurologic physical therapy specialist. Dr. Kloos has worked as a consultant physical therapist at the OSU Movement Disorders Clinic since 2005. She is the Co-Director of the Ohio State University Neurologic Physical Therapy Residency Program. Dr. Deb Kegelmeyer has over 30 year’s clinical experience and is currently a Professor of Health and Rehabilitation Sciences at The Ohio State University. She has extensive clinical expertise having worked in acute care, out-patient therapy and spent 10 years as director of physical therapy at a sk
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Stop, Collaborate and Listen
12/05/2022 Duración: 25minJenna Heilman joins me to talk about collaboration
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VIBRANT-HD with Beth Borowsky of Novartis
10/05/2022 Duración: 25minBeth Borowsky is an Executive Director and Senior Global Program Clinical Head in Neuroscience at Novartis Pharmaceutical Corporation, where she has been since 2018. Prior to Novartis, Beth spent 12 years doing clinical research and development for Huntington’s Disease, first at CHDI Foundation, where she was the Director of Translational Medicine, and then at Teva Pharmaceuticals, where she was a Senior Clinical Development Director. Prior to that, Beth spent 13 years in CNS drug discovery and development with Sanofi-Aventis and Synaptic Pharmaceuticals. Beth received a BS in Psychology and Neurobiology from Rutgers University, and a PhD in Pharmacology from Duke University Medical Center. She completed her post-doctoral training at the National Institute of Mental Health
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Rare Youth Revolution
28/04/2022 Duración: 22minNicola is the co-founder and editor-in-chief for Rare Revolution Magazine. With a strong background in design and a passion for writing, Nicola is the driving force behind their creative vision, and uses her strategic experience in large-scale project planning to oversee their varied work, including RARE Youth Revolution. Nicola is co-founder and trustee of the charity Teddington Trust, volunteering her time to drive forward their mission—supporting families living with the ultra-rare condition xeroderma pigmentosum. Nicola is also author of the award-winning rare disease children’s book series, Little Ted. When not dedicating her time to rare disease, she is raising her two gorgeous sons, and is a rare mama herself. Chelsea's bio: I'm currently 22, and I'm in my final year studying Business Management and Psychology at the University of Aberdeen. My current job is a student notetaker, where I take notes for students with disabilities so they have sufficient notes for their studies. I am the Administrative V
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My HD Story
21/04/2022 Duración: 19minKaren Anderson, MD, is a psychiatrist specializing in neuropsychiatry, and director of the Huntington’s Disease Care, Education and Research Center at MedStar Georgetown University Hospital. Dr. Anderson sees adult patients and families dealing with behavioral symptoms caused by neurological conditions such as Huntington’s disease, Parkinson’s disease, Alzheimer’s disease and brain injuries. She is also an associate professor of psychiatry and neurology at Georgetown University Medical Center. In addition to seeing patients and their families, Dr. Anderson is active in research. She’s currently the co-principal investigator on a clinical trial studying a medication to treat Huntington’s disease, and another studying a medication for tardive dyskinesia, a neurological disorder. Dr. Anderson is also involved in research to develop treatment for the behavioral symptoms of Parkinson’s disease, brain injury and Alzheimer’s disease. Jody Goldstein formally joined the staff of the HSG in March 2020. Her expertise i
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May is HD Awareness Month
14/04/2022 Duración: 10minJoin us to hear about what Help 4 HD International is doing for awareness during the month of May.
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Advocacy, ALS Edition
07/04/2022 Duración: 45minFor more information: https://iamals.org/stories/jean-swidler/
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Autumn's Sweet 16
31/03/2022 Duración: 09minPlease reach out to Londen Tabor (Londen@Help4HD.org) or Lauren Holder (lauren@help4hd.org) to donate to Autumn's Adventure Fund. :)
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Dr. Hayden with Prilenia
18/03/2022 Duración: 30minDr. Hayden is the CEO of Prilenia. He is an accomplished scientist and physician. He is a Killam Professor at the University of British Columbia and Senior Scientist at the Centre for Molecular Medicine and Therapeutics. He is also a Canadian Research Chair in Human Genetics and Molecular Medicine. Dr. Hayden was the President of Global R&D and Chief Scientific Officer at Teva from 2012-2017. He led the approval of Austedo for chorea in HD, the second drug ever to be approved for HD in the USA. Author of approximately 900 peer-reviewed publications, he has focused his research primarily on Huntington Disease, translational medicine, including genetics, lipoprotein disorders, predictive, personalized medicine and drug development. He also identified the first mutations underlying Lipoprotein Lipase Deficiency and developed gene therapy approaches resulting in the first approved gene therapy product (Glybera) in the world. Dr. Hayden is the recipient of numerous prestigious honors. Most recently, he was aw