Sinopse
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.
Episódios
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The HD View with First HD
20/08/2013 Duração: 51minTonight our special guests are Dr. Samuel Frank - Associate Professor of Neurology and co-Director of Neurology Resident Education at Boston University and is involved with many HSG studies and trials, and Dr. David Stamler - Chief Medical Officer at Auspex Pharmaceuticals. Tonight we will be discussing First-HD, which is is a Phase III clinical research trial of an investigational drug called SD-809 Extended Release (ER) in persons who have a diagnosis of Huntington disease (HD). First-HD will be enrolling participants across North America (United States and Canada) who have been diagnosed with HD and who have never taken tetrabenazine (Xenazine ®, Nitoman ®). Participants will be involved in this trial for approximately 4 months. Stay tuned and we look forward to having an awesome show tonight!
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The HD View Ask Dr. Goodman Show
13/08/2013 Duração: 01h05minTuesday, August 13, 2013 Ask Dr. Goodman about pain in Huntington's disease tonight. Read her new article, "Body Discomfort and Pain in Huntington's Disease" According to two recent studies from the United Kingdom, bodily discomfort (which refers to total body physical suffering) and pain (which refers to localized physical suffering) are problems in Huntington's disease (HD) that significantly affect quality of life. Both studies, which included a total of 140 home-dwelling individuals in middle stages of HD, reported that more than 50% suffered from at least moderate discomfort/pain, and about 10% more severely. This is a large number, much higher than occurs in an age-matched general population. Unfortunately, very little is known about this symptom in HD . . .
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"Help 4 HD - News Channel" with Terry Tempkin of UC Davis!
06/08/2013 Duração: 01h07minPRE-CELL! Help 4 HD International is excited to announce that UC Davis will begin recruitment for PRE-CELL which is the lead-in observational study for their future planned stem cell trial for Huntington's disease. Per Terry Tempkin (Clinical Project Manager): "UC Davis has received approval from the Institutional Review Board (IRB), to begin the observational PRE-CELL study." Terry Tempkin went on to say: "We are excited to begin the project and appreciate everything the Huntington's disease community has done to help this project come to fruition. In addition to Dr. Nolta's scientific achievement, and Dr. Wheelock clinical experience, the HD community played an important role in giving a face to Huntington's disease. The UC Davis Stem Cell Project Executive Committee is very grateful to all of the people who showed up at CIRM public meetings, and created visibility through their activities to educate CIRM about the importance of funding projects to help find a treatment or a cure for Huntington's diseas
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Help 4 HD News Channel Review with Dr. Jan Nolta
30/07/2013 Duração: 46minPre-Recorded Show... Today's episode is a prelude to next weeks LIVE update with Teresa Tempkin RNC, MSN, ANP from the HDSA Center of Excellence, University of California, Davis Medical Center, Department of Neurology. Hello everyone! It was one year ago Help 4 HD News Channel invited Dr. Jan Nolta, Director of the UC Davis Stem Cell Program on the show to tell us about their CIRM (California Institute for Regenerative Medicine) grant award for the first human stem cell clinical trial for Huntington's disease. Exactly one year later UC Davis IRB (Institutional Review Board) gave the green light to begin the PRE-CELL study which is the lead-in observational study for their future stem cell trial for Huntington's disease. Read about PRE-CELL Tune in for some amazing information about the upcoming clinical trial...
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The HD View with Dr. Alicia Semaka
23/07/2013 Duração: 41minTuesday, July 23, 2013 - 3:30 pm PST/6:30 pm EST Our incredible special guest tonight is Dr. Alicia Semaka, a Postdoctoral Fellow at the University of British Columbia. She received her MSc in Genetic Counseling in 2005 and her PhD in Medical Genetics under the supervision of Dr. Michael Hayden at the Centre for Molecular Medicine & Therapeutics in 2012. Her doctoral research focused on intermediate alleles for Huntington disease. Using a unique, multidisciplinary methodology that combined molecular and qualitative techniques, she generated new data on the frequency, haplotype, and CAG repeat instability of intermediate alleles and explored patient understanding and genetic counseling practices regarding intermediate allele predictive test results. Her research findings fill a significant gap in our knowledge on intermediate alleles and have important implications for predictive testing. We will be discussing an overview of her research relating to implications for genetic counseling/predictive testing
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The HD View PREQUEL Update
16/07/2013 Duração: 58minTuesday, July 16, 2013 - 3:30 pm PST/6:30 pm EST Our incredible special guest tonight is Dr. Christopher Ross who is Professor of Psychiatry, Neurology, Pharmacology and Neuroscience at Johns Hopkins University School of Medicine, Director of the Division of Neurobiology, Director of the NINDS-funded Baltimore Huntington’s Disease Center, and Director of the Huntington’s Disease Society of America Center of Excellence at Johns Hopkins. Tonight PI Dr. Ross will give us an update on the HSG clinical trial PREQUEL. The results are in on this CoQ10 trial.
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The HD View with Emily Fisher
09/07/2013 Duração: 52minTUESDAY, July 9, 2013 Tonight our incredible special guest is Emily Fisher, MSc Medical Genetics, Centre for Molecular Medicine and Therapeutics at the University of British Columbia. In 2012, Emily Fisher completed her Master's degree in science specializing in Medical Genetics at the University of British Columbia. Emily's thesis project focused on the epidemiology of HD. This is very important work and we are going to find out what that means to us. Her study was conducted in British Columbia, Canada, and provided much needed information required in order to inform community-specific service needs and to plan appropriately for clinical trials and distribution of upcoming therapies. Tune in for a very informative program.
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Help 4 HD with Dan Brennan at Lundbeck
04/06/2013 Duração: 39minPre-Recorded in 2011... Introducing Dan Brennan from Lundbeck and talk about RNAi.
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Help 4 HD with Dr. Robert Pacifici, CHDI Foundation
28/05/2013 Duração: 31minPRE-RECORDED... December 2010, hosted by BJ Viau Robert Pacifici was the Site Director and Chief Scientific Officer at the Research Triangle Park Laboratories of Eli Lilly and Company. There he oversaw the company's global screening and quantitative-biology efforts. Prior to joining Lilly, Robert was Vice President of Discovery Technologies at Xencor, a privately held biotechnology company that applied rational design principles to the development of protein therapeutics. At Amgen for nearly ten years, Pacifici’s responsibilities increased. He led their automation, high throughput screening, and information technologies groups. In addition, he was instrumental in forging Amgen's relationships with Caliper Technologies and The Automation Partnership as well as the acquisition of Kinetix Pharmaceuticals. Robert received a BS in Biochemistry from the University of Massachusetts, Amherst, and a PhD in Biochemistry from the University of Southern California. He holds an adjunct appointment at the University of
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The HD View with Jimmy Pollard
21/05/2013 Duração: 01h25minTuesday, May 21 PRE-RECORDED... Celebrating Woodie Guthrie through the eyes of Jimmy Pollard. May is Huntington's Disease awareness month. Tune in to a fabulous interview with the one and only Jimmy Pollard.
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The HD View ~ Ask Dr. Goodman Show
07/05/2013 Duração: 58minTuesday... new show time! Dr. Goodman will be with us tonight to talk about CHDI foundation and their role as the "collaborative enabler" with financial clout in drug development for Huntington's disease. Tune in for a very informative show.
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Help 4 HD with Dr. Diana Rosas - CREST-E III
29/04/2013 Duração: 46minOur incredible special guest tonight is Dr. Diana Rosas, MD, Director, Center for Neuro-Imaging of Aging and Neurodegenerative Disease. Dr. Rosas and her team have focused primarily on the development of biomarkers for use in the study of neurodegenerative diseases, to better characterize progression, to better understand genotype/phenotype correlations and to apply novel neuroimaging approaches in clinical trials with the overall aim of making them more efficient. Dr. Rosas’ lab has begun to develop models that may explain clinically heterogeneous phenotypes and variability in disease progression. The current models for both disease prediction and prediction of disease progression are insensitive and inaccurate. Dr. Rosas is planning to expand her efforts to include multi-modal and multi-spectral imaging approaches that promise both more precise measurements and may provide novel and important information on the neural underpinnings of HD and their clinical consequences. Dr. Rosas is Co-Principal Inves
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Help 4 HD with Dr. Ira Shoulson
22/04/2013 Duração: 01h12minPre-recorded... Tonight our incredible special guest is Dr. Ira Shoulson founder of the Parkinson Study Group and the Huntington Study Group. Be sure to listen to our first interview with Dr. Shoulson on May 9, 2011. Dr. Shoulson is Professor of Neurology, Pharmacology and Human Science and Director of the Program for Regulatory Science and Medicine (PRSM) at Georgetown University. www.huntington-study-group.org
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The HD View with Dr. Mary Edmondson
15/04/2013 Duração: 01h33minPRE-RECORDED January 30, 2012 Today's episode is with Dr. Mary Edmondson, a medical physician and a psychiatrist from Duke University, North Carolina; and a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD), which is a wonderful organization that provides education, medical and social service care for Huntington's (HD) families in North Carolina. She too belongs to an HD family and brings a personal perspective to care. In her "Recognizing Trigger Behaviors" workshops she first spoke of “empathy” or the capacity to think and feel the inner life of those who have HD. It was from this perspective that she talked about irritability in HD: What it is, why it happens, how it feels for both the HD person and care-partners, how to understand it, and tips to control it.
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The HD View with Danny Cahill
08/04/2013 Duração: 01h02minMonday, April 8, 2013 3:30 pm PT/6:30 pm ET - Super special incredible guest tonight will be Danny Cahill, winner of the hit TV series, season 8 of The Biggest Loser. Danny lost 239 pounds in 7 months! Amazing story about how his life was literally turned around by his wife Darci and a prayer. Of course, The Biggest Loser is really the biggest winner. His life has been changed forever. Tune in for an uplifting and inspirational show!
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The HD View Ask Dr. Goodman Show
01/04/2013 Duração: 01h00sMONDAY, April 1, 2013 3:30 pm PT/6:30 pm ET It's time to ask Dr. Goodman "your" questions about the care and treatment of Huntington's disease... Tonight the topic is "What's empathy got to do with it?" Read her article, ask Dr. Goodman "your" questions and listen to the show. Please tell all your colleagues, friends and family about Help 4 HD Radio and click follow on our show page to get email reminders of upcoming episodes. Dr. Goodman's listeners have grown to more than 10,000 strong and every month you will get to have direct contact with one of the leading physicians who does care with empathy for our H'Dears and JH'Dears. Thanks for tuning in. Talk to you soon!
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The HD View with Dr. Neal Hermanowicz
25/03/2013 Duração: 01h10minMONDAY, March 25, 2013 Our incredible special guest tonight is Dr. Neal Hermanowicz, Director of the Movement Disorders Program at the University of California at Irvine. Dr. Hermanowicz is engaged foremost in patient care. He is a member of the Parkinson’s Study Group, The Huntington’s Study Group, the Dystonia Study Group, and the Multiple Systems Atrophy Study Group. Dr. Hermanowicz has been involved in numerous clinical trials and research in the area of movement disorders. UC Irvine Medical Center’s Movement Disorders Services is a multidisciplinary practice that includes neurology, neurosurgery, nursing, physical therapy and nutritional counseling. Dr. Neal Hermanowicz, director, emphasizes that UC Irvine’s movement disorders specialists take a case management approach, which promotes communication among all the members of the team. This has a lot of benefits for patients with complex disorders like Parkinson’s disease, Hermanowicz says.
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The HD View with Prana Biotechnology, Ltd.
18/03/2013 Duração: 01h03minMONDAY, March 18, 2013 Topics that will be focused on are: Our therapeutic strategy ‘MPAC’ technology, what are these compounds like PBT2? Brief historical background as to where our HD program came from. A bit of science (although without AV this will be brief indeed) Why we are hopeful that the mechanism of action may provide patient benefit. In particular our previous work with PBT2 in AD. Outline of Reach2HD, status.
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The HD View with Dr. Mary Edmondson
11/03/2013 Duração: 01h24minMONDAY, MARCH 11, 2013, 3:30 PM PT/6:30 PM ET Our incredible special guest tonight is Dr. Mary Edmondson. She is a physician/psychiatrist from Duke University, North Carolina and a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD). She will be here to talk about strategies on how to communicate with people who are experiencing anosognosia [medical term for lack of awareness] and strategies to keep them engaged...with family and medical care. Dr. Edmondson also comes from a Huntington's family, so she knows our struggles and fears. She is here to help us tonight and we thank her for her time. Get your questions ready and send them to us in the chat room or email: [email protected]