Help 4 Hd Live!

Informações:

Synopsis

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.

Episodes

  • Brain Donation

    14/11/2018 Duration: 28min

    Dr. Hefti is Assistant Professor of Pathology at the University of Iowa and directs the Iowa Brain Bank. He received his MD from the Mount Sinai School of Medicine in New York City and did his pathology training at Harvard Medical School in Boston before returning to Mount Sinai for his neuropathology fellowship. While at Mount Sinai, he worked in the laboratory of Dr. John Crary, an expert in the neuropathology of neurodegenerative disease. He works closely with Dr. Nopoulos to identify neuropathological correlates of the structural changes seen in her imaging studies and has a particular interest in the role of the tau protein in Huntington’s disease.

  • Dr. LaVonne Goodman Part 3

    07/11/2018 Duration: 01h03min

    Please follow along on http://hddrugworks.org/dr-goodmans-blog Dr. LaVonne Goodman's bio: -Family member, lost first husband to HD -Internal Medicine M.D. more than 40 years -Practice limited to HD last decade -Now retired from office practice but serve as a “volunteer physician”, continuing to see homebound and long-term care HD patients -Previous president and board member of the Northwest Chapter of HDSA (now WA State HDSA) -Member of HSG and the combined HSG and EHDN Behavioral Working Group -Co-author of Guides for Treatment of Irritability and Obsessive Compulsive Symptoms in HD (2011) -Co-author of the Guidelines for Management of Neuropsychiatric Symptoms in HD (2018) -Co-author of Contemporary Care of Huntington’s Disease in the Handbook of Clinical Neurology (2018) -Co-founder and writer for Huntington’s Disease Drug Works, a website presently dedicated to HD Care

  • Dr. Lavonne Goodman Part 2

    31/10/2018 Duration: 58min

    Please follow along on http://hddrugworks.org/dr-goodmans-blog Dr. LaVonne Goodman's bio: -Family member, lost first husband to HD -Internal Medicine M.D. more than 40 years -Practice limited to HD last decade -Now retired from office practice but serve as a “volunteer physician”, continuing to see homebound and long-term care HD patients -Previous president and board member of the Northwest Chapter of HDSA (now WA State HDSA) -Member of HSG and the combined HSG and EHDN Behavioral Working Group -Co-author of Guides for Treatment of Irritability and Obsessive Compulsive Symptoms in HD (2011) -Co-author of the Guidelines for Management of Neuropsychiatric Symptoms in HD (2018) -Co-author of Contemporary Care of Huntington’s Disease in the Handbook of Clinical Neurology (2018) -Co-founder and writer for Huntington’s Disease Drug Works, a website presently dedicated to HD Care

  • Dr. LaVonne Goodman

    24/10/2018 Duration: 50min

    Dr. LaVonne Goodman's bio: -Family member, lost first husband to HD -Internal Medicine M.D. more than 40 years -Practice limited to HD last decade -Now retired from office practice but serve as a “volunteer physician”, continuing to see homebound and long-term care HD patients -Previous president and board member of the Northwest Chapter of HDSA (now WA State HDSA) -Member of HSG and the combined HSG and EHDN Behavioral Working Group -Co-author of Guides for Treatment of Irritability and Obsessive Compulsive Symptoms in HD (2011) -Co-author of the Guidelines for Management of Neuropsychiatric Symptoms in HD (2018) -Co-author of Contemporary Care of Huntington’s Disease in the Handbook of Clinical Neurology (2018) -Co-founder and writer for Huntington’s Disease Drug Works, a website presently dedicated to HD Care

  • Dr. Ed Wild from HD Buzz

    17/10/2018 Duration: 35min

    Ed a consultant neurologist at the National Hospital for Neurology and Neurosurgery and Associate Director of the UCL Huntington’s Disease Centre, where his research team is focused on accelerating drug development through discovering new biomarkers for Huntington’s disease. He leads an MRC-supported longitudinal biomarker study, HD-CSF, and is Global Chief Investigator of the HDClarity study of cerebrospinal fluid in Huntington’s disease. He led the development of the first measurement platform to quantify the mutant huntingtin protein in cerebrospinal fluid and the discovery of neurofilament light protein as the first blood biomarker to predict onset of Huntington’s. He is a senior advisor and investigator in the Ionis / Roche programme to lower the production of mutant huntingtin, the cause of Huntington’s disease. He won the Huntington Society of Canada Community Leadership Award in 2012, the Huntington’s Disease Society of America Researcher of the Year Award in 2014 and Huntington Study Group Insight of

  • Shelby

    09/10/2018 Duration: 10min

    While she may be petite in stature, Shelby Lentz has a voice that will fill any venue. Shelby's talent was recognized at an early age and by fourteen, she was singing the National Anthem at local sporting venues, performed for the first time at the Wild Bull Saloon and earned over 100,000 votes in Bob Kingsley's Future Star online competition. It would not take long before she was grabbing the attention of others in the industry and at just fifteen she opened at The State Theater in Kalamazoo for Warner Music artist, Frankie Ballard. It was also about this time that she began collaborating with local song writers on original music as well. She went on to also open for former American Idol finalist, Matt Giraud, as well as international recording artist, Joanne Shaw Taylor. Shelby spent two years pursuing music in Nashville, Tennessee where she attended Belmont University and worked at the Grand Ole Opry. She recorded two studio EPs while in Nashville and performed on Broadway at the famous Tootsies. Her secon

  • Shelby Lentz - Champions For HD

    09/10/2018 Duration: 16min

    While she may be petite in stature, Shelby Lentz has a voice that will fill any venue. Shelby's talent was recognized at an early age and by fourteen, she was singing the National Anthem at local sporting venues, performed for the first time at the Wild Bull Saloon and earned over 100,000 votes in Bob Kingsley's Future Star online competition. It would not take long before she was grabbing the attention of others in the industry and at just fifteen she opened at The State Theater in Kalamazoo for Warner Music artist, Frankie Ballard. It was also about this time that she began collaborating with local song writers on original music as well. She went on to also open for former American Idol finalist, Matt Giraud, as well as international recording artist, Joanne Shaw Taylor. Shelby spent two years pursuing music in Nashville, Tennessee where she attended Belmont University and worked at the Grand Ole Opry. She recorded two studio EPs while in Nashville and performed on Broadway at the famous Tootsies. Her secon

  • Zoe Cruz - Huntington Puerto Rico

    26/09/2018 Duration: 42min

    Join us to hear Zoe Cruz talk about the Puerto Rico Huntington's Foundation

  • Lauren Holder - IVF with PGD

    20/09/2018 Duration: 18min

    Check out the group IVF with PGD for Huntington's disease on Facebook. Also check out the following links: http://babyquestfoundation.org/ https://www.univfy.com/fertilitychronicles/grant-programs

  • Stacey and Vicki - Chief of Police Conference

    12/09/2018 Duration: 36min

    Join us to hear from Stacey and Vicki about their advocacy efforts at the Chief of Police Conference

  • Leah Barker - How Suicide Affects the HD Community

    05/09/2018 Duration: 31min

    You can find Leah's bio on capturingthecorners.com

  • Matt Ellison

    29/08/2018 Duration: 22min

    Join us to hear Matt Ellison give an update on what’s happening with HDYO.

  • Chris Delaney - LegalShield

    15/08/2018 Duration: 31min

    Chris Delaney's bio:  "Everything changes when you make all of your decisions based on a dream" Chris Delaney has trained and spoken in front of thousands across the United Staes in various leadership roles within the Corporate America, small business, and entrepreneurship spaces. As a coach and consultant, Chris has helped countless individuals and business owners bring their vision to fruition through authentic connection and clearly defined action.  

  • Leah Barker - Capturing The Corners

    08/08/2018 Duration: 28min

    Leah Barker is a young woman who has tested positive for Huntington's Disease. She is an advocate for HD and mental health, and is also the owner of the blog "Capturing the Corners", which delves into the difficult topic of mental illness. You can find her complete bio on her website: http://capturingthecorners.org/  

  • Amy Rose—Speech Therapy & HD

    25/07/2018 Duration: 31min

    Dr. Amy J. Rose is an Assistant Professor in the Department of Communication Sciences and Disorders at Western Carolina University. She received her doctorate from the University of North Carolina at Greensboro and has over 25 years of clinical experience serving children and adults with communication disorders. Dr. Rose currently teaches both undergraduate and graduate students with courses in Dysphagia, Voice Disorders, Genetics, and Adult Language Disorders. Research projects include the development of friendship and social skills in disability populations and international service learning and collaboration in developing countries, most recently in Botswana, Africa.

  • Staci Cushenberry—Aging out of NYA

    18/07/2018 Duration: 23min

    I’m Staci Cushenbery, formally Nicholas and am 34 years old. My husband and I live in Harper, KS with our 4 kiddos and several dogs. Together we own a trucking business in the oil field and I also am a LuLaRoe retailer. On top of my super busy life I try to advocate for HD as often as anyone will let me. My first experience with HD was when my mom tested positive. From there on I’ve wanted to be as active as possible despite having no local resources. I was one of the founding members of the NYA where I served on the board for many years and headed the Silent Auction. My very first experience with the HD convention was a support group, from there my love for helping others was created. I have a degree in Psychology and a Masters in Social Work. Facilitating groups, helping children, and HD families is my passion. Most recently, I’ve joined up with others who have reached the age of 30+ and felt lost without the support they’d known to grow and love. We came up with the HDYAC, where my role will be limited but

  • Anna Lunsford—#DearHD

    11/07/2018 Duration: 18min

    "My name is Anna Lunsford, I am 22 years old and live in Columbus, Ohio. I graduated from Ohio State University with a Bachelor's in Psychology and Women's Studies and will return this fall to begin my Masters in Social Work. My dad and four of his siblings inherited Huntington's Disease from my grandfather. In June 2016, I was the first of a very large family to receive a positive result pre-symptomatically. I currently work in the Animal Cruelty Investigations department at a humane society coordinating a program for pets of survivors of domestic violence. I spend the rest of my time traveling and advocating for Huntington's Disease. I immediately recognized the importance of being involved with research and have participated in Enroll-HD, Predict-HD, and an exercise study at the University of Iowa. Additionally, I was invited to be a part of HD-COPE and flew to London this February for training as a patient advisory group member. I sit as the Chair of Communications on the NYA Board and am training to run

  • Lauren Holder - Pregnancy and Genetic Testing

    04/07/2018 Duration: 23min

    Lauren Holder’s grandfather was diagnosed with Huntington’s disease (HD) when she was just a teen. After a few years, at the age of 20, Lauren decided to be tested for HD, ultimately testing positive. Despite this, Lauren remained dedicated to caring for her father, who is now symptomatic, and the larger HD community. In 2017, at the age of 32, Lauren found out she was pregnant unexpectedly. Because of the risk of passing on HD, she chose to undergo genetic testing for the baby. She now has a beautiful baby girl that is HD negative.

  • HOPES

    27/06/2018 Duration: 16min

    HOPES is a student-run project at Stanford University dedicated to making scientific information about Huntington’s disease (HD) more readily accessible to patients and the public. Their goal is to survey the rapidly growing scientific and clinical literature on Huntington’s disease, and to present this information in a coherent, reliable web resource.  We are excited to have Stanford student Cole Holderman on with us! Cole is the student director of HOPES at Stanford University, a project dedicated to helping families, patients, and the general public learn more about Huntington's Disease.  Cole has been with HOPES for most of his undergraduate career and has served as a writer for the group's website (hopes.stanford.edu) a point of contact for the local HDSA support group, and a leader for other members of the HOPES team. In addition to his work with HOPES, Cole is also a board member of HDSA Northern California, the HDSA National Youth Association Lead for California, and a student at Stanford University

  • Global Genes

    20/06/2018 Duration: 27min

      Angie Rowe joins the Global Genes team as Chief Operating Officer. She has over 17 years experience in executive management of LLCs and non-profits. She most recently spent the past 8 years managing and directing various aspects of the U.S. Bank OC Marathon and related events. In this role, she also developed and implemented the OC Marathon Foundation’s very successful Kids Run the OC program. Prior to the OC Marathon, Angie was president of the Junior League of Orange County, CA. In addition, she has served on various non-profit boards throughout the county, and in those roles helped several in their start-up phases. Angie is a breast cancer survivor, enhancing her excitement about joining Global Genes because she personally understands the value in an accurate genetic diagnosis. Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes R

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