Help 4 HD Live!
526 episodes - English - Latest episode: 6 days ago - ★★★★★ - 11 ratingsWelcome 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 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 you own physician for advice about any medical recommendation.
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Episodes
COVID-19 and HD
April 08, 2020 20:00 - 44 minutes - 39.6 MBBecause we are all concerned about COVID-19 right now, we are re-airing our show with Dr. Wheelock and Lisa Mooney. Dr. Vicki Wheelock is a neurologist and the director of the HDSA Center of Excellence at UC Davis Health. The mission of the HD clinic at UC Davis is to provide expert and compassionate care to people and families affected by HD, to provide outreach and education to families and health care professionals, and to advance HD research. Dr. Wheelock has extensive experience in HD e...
Wave Life Sciences
March 25, 2020 20:00 - 21 minutes - 19.1 MBAmong Dr. Kenechi Ejebe’s responsibilities at Wave is to serve as the clinical lead of the Neurology (CNS) programs which include Huntington’s disease, amyotrophic lateral sclerosis, and frontotemporal dementia. Dr. Ejebe has more than 10 years of translational and clinical research experience focused on developing innovative treatments for patients. Prior to joining Wave, he was a Resident Physician in Psychiatry at the Mount Sinai Hospital. Prior to that he was a member of the founding sci...
Dr. Wheelock and Lisa Mooney Talk Risk factor and More with COVID-19 and HD
March 19, 2020 22:00 - 44 minutes - 39.6 MBDr. Vicki Wheelock is a neurologist and the director of the HDSA Center of Excellence at UC Davis Health. The mission of the HD clinic at UC Davis is to provide expert and compassionate care to people and families affected by HD, to provide outreach and education to families and health care professionals, and to advance HD research. Dr. Wheelock has extensive experience in HD education and research, and has been an investigator for HD observational studies and clinical trials since 1997. Lisa...
Terry Tempkin,NP-C, MSN Talks About HD During These Hard Times with COVID-19
March 18, 2020 20:08 - 45 minutes - 40.6 MBTerry Tempkin, NP-C, MSN, is an Adult Nurse Practitioner who spent 18 years working with Huntington’s disease families at the University of California Davis Health System. During her time there, she worked with the HD team to build one of the largest HD programs in the country, noted for their expertise in HD/JHD care. She participated in over 18 clinical trials in Huntington’s disease. Although she retired from the Health System in 2016, she did not retire from the passion to care for fa...
European Huntington Association
March 12, 2020 20:00 - 21 minutes - 19.2 MBPlease visit http://eurohuntington.org/ for more information.
KINECT-HD
March 04, 2020 21:00 - 29 minutes - 26.1 MBFor more information about KINECT-HD, please visit the HSG website at: https://huntingtonstudygroup.org/current-clinical-trials/kinect-hd/
What Makes Me Rare
February 26, 2020 21:00 - 10 minutes - 8.69 MBhttps://www.rarediseaseday.org/ https://huntingtonsdiseasenews.com/2020/02/20/rare-disease-day-2020-recognized-around-the-world/ #whatmakesmerareHD
HDYO Genetic Testing
February 19, 2020 21:00 - 16 minutes - 14.3 MBHDYO has a new Genetic Testing program! Please visit their website for more information: www.hdyo.org Matt Ellison's bio: "Hi! My role at HDYO includes developing all the educational project work we do for our website, including video projects, overseeing the youth camps and events HDYO hosts globally, planning future global projects to expand our reach, keeping the website up-to-date, responding to any messages we are sent for support/advice/questions and coordinating our volunteer translat...
Patty and Bryan
February 05, 2020 21:00 - 41 minutes - 36.7 MBPatty Romero-Mabry shares her HD experience as a caregiver for her husband and her son with JHD. For information on how you can help Patty and Bryan, please contact Lauren Holder at [email protected]
Melissa Dilley's HD Journey, Part 2
January 29, 2020 21:00 - 15 minutes - 13.2 MBMelissa (Dilley) Ryant has been a member of the Huntington's Disease Society of America's (HDSA) National Youth Alliance (NYA) since attending her first convention in 2013. From that point, Melissa volunteered to serve on the NYA board for 6 years. Her mother had HD and was symptomatic her entire life, until she passed away in 2008. A few years later, Melissa tested gene negative at the age of 24. That led her to reaching out to the NE Ohio HDSA Chapter and since then she has continued to be ...
Melissa Dilley’s HD Journey
January 22, 2020 21:00 - 32 minutes - 28.9 MBMelissa (Dilley) Ryant has been a member of the Huntington's Disease Society of America's (HDSA) National Youth Alliance (NYA) since attending her first convention in 2013. From that point, Melissa volunteered to serve on the NYA board for 6 years. Her mother had HD and was symptomatic her entire life, until she passed away in 2008. A few years later, Melissa tested gene negative at the age of 24. That led her to reaching out to the NE Ohio HDSA Chapter and since then she has continued to be ...
Felodipine and HD
January 15, 2020 21:00 - 29 minutes - 26.1 MBDavid Rubinsztein is Professor of Molecular Neurogenetics and a UK Dementia Research Institute Professor at the University of Cambridge. He is Deputy Director of the Cambridge Institute for Medical Research. Dr. Rubinsztein earned his MB ChB, BSc(Med)Hons, and PhD degrees from University of Cape Town. He came to Cambridge in 1993 as a Senior Registrar in genetic pathology and was the first person to complete formal training in this field in the UK. His research is focused in the field of auto...
Help 4 HD 2019 Recap
January 08, 2020 18:30 - 37 minutes - 33 MBJoin us as Katie Jackson and Katrina Hamel give a recap of 2019
Coming Down From The Holiday Season - Rerun
January 01, 2020 21:00 - 46 minutes - 41.7 MBComing Down From The Holiday Season - Rerun
Surviving the Holidays Rerun
December 25, 2019 21:00 - 36 minutes - 32.5 MBSurviving the Holidays Rerun
MC10 and Gait Impairment
December 18, 2019 21:00 - 31 minutes - 28.3 MBArthur Combs, MD is a physician executive and serial entrepreneur. After more than 20 years in clinical practice Art has spent the last 20 years bringing new medical technologies to market, as an officer of 5 successful start-up companies and a Fortune 500 senior executive. His focus has been on non-invasive technologies, although he has consulted across the life science spectrum from pharma to biotech, proteomics, molecular diagnostics and medical devices. Art is currently the CMO of MC10 In...
Dr. David Baranger
December 11, 2019 21:00 - 35 minutes - 31.3 MBDr. Baranger is a Postdoctoral Scholar with Dr. Erika Forbes, at the University of Pittsburgh. He studies how risk factors for psychopathology - particularly early life stress and genetic risk - influence brain development. His work has so far focused on brain structure and reward processing, with an emphasis on better understanding the neurobiology of substance use and depression. He completed his PhD in Neuroscience at Washington University in St Louis, where he worked with Dr. Ryan Bogdan ...
Emerald Health Pharmaceuticals
December 04, 2019 21:00 - 20 minutes - 17.7 MBDr. Jim DeMesa is the Chief Executive Officer of Emerald Health Pharmaceuticals (“EHP”). Dr. DeMesa has 30 years of experience in biotechnology and pharmaceutical leadership, product development and clinical and regulatory management. He is a former practicing physician, CEO of two public biotech companies, and a board member of several biotech companies. Emerald Health Pharmaceuticals is a clinical-stage biotech company developing unique therapies that combine biotechnology with cannabinoid...
CHANGE-HD
November 27, 2019 21:00 - 28 minutes - 25.4 MBSonia Slevinski, MS, NCC, is a research manager and has been with the Peg Nopoulos Laboratory since 2008. Slevinski studied sociology and counseling psychology and is a National Certified Counselor (NCC). She worked in community and inpatient mental health services for ten years before joining the Nopoulos Lab as a research associate. She became the coordinator for the Kids-HD study in 2011, managing study administration, assessment and participant enrollment. Since 2013, Slevinski has served...
Dr. Julie Stout
November 20, 2019 21:00 - 32 minutes - 28.7 MBJulie Stout is Professor in the School of Psychological Sciences at Monash University. She leads a team of post-docs, students, and IT specialists, employing techniques from neuropsychology and cognitive neuroscience to characterise the effects of neurodegeneration on cognition and brain function. Her research group is known for innovations in assessments using computerised and sensor-based approaches. Professor Stout is a leading international expert in Huntington’s Disease. Her team has...
When Does It Begin?
November 13, 2019 21:00 - 31 minutes - 27.6 MBDr. Ellen van der Plas is an assistant professor at the University of Iowa Hospital & Clinics. Ellen received her Bachelor’s and Master’s degree in Developmental Psychology at the University of Leiden in the Netherlands. She moved to the US in 2007 for graduate school at the University of Iowa. In 2011, she obtained her PhD degree in neuroscience under the mentorship of Dr. Peg Nopoulos. She moved to Toronto, Canada that same year to pursue a postdoctoral fellowship at the Hospital for Sick C...
Zinc Fingers
November 06, 2019 21:00 - 26 minutes - 23 MBEd is 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 pl...
Guilt and Grief in HD
October 30, 2019 20:30 - 39 minutes - 34.9 MBKatie Jackson and Katrina Hamel talk about guilt and grief
Falls Prevention
October 23, 2019 20:00 - 37 minutes - 33.1 MBSome resources that are available: https://www.ncoa.org/healthy-aging/falls-prevention/ http://stopfalls.org/ https://www.help4hd.org/resources
Always Looking Forward
October 16, 2019 20:00 - 28 minutes - 25.1 MBAlexus writes the column Always Looking Forward at Huntington's Disease News. She is 22 and was diagnosed as a Huntington's Gene carrier earlier this year. Additionally, she works in healthcare consulting, which she started after graduating undergrad from MIT To read her column, please visit: https://huntingtonsdiseasenews.com/category/always-looking-forward-a-column-by-alexus-jones/
American Foundation for Suicide Prevention
October 02, 2019 20:00 - 35 minutes - 32 MBAs a psychologist with experience that spans clinical, educational, and professional settings, Dr. Marshall has been engaged in local and national suicide prevention and postvention work for more than 15 years. Since joining AFSP in 2014, Dr. Marshall has expanded AFSP’s menu of programs and improved program delivery through AFSP’s nationwide network of chapters. Dr. Marshall oversees AFSP’s Prevention and Education and Loss and Healing programs, which includes community-based suicide prevent...
Peter Holmans Research
September 25, 2019 20:00 - 23 minutes - 20.4 MBDr. Holmans is head of the Biostatistics and Bioinformatics Unit at the MRC Centre for Neuropsychiatric Genetics and Genomics at Cardiff University, and has over 25 years' experience in the statistical analysis of complex genetic traits, both in data analysis and developing novel genetic methodology. He has led the statistical analysis of large multicentre collaborations in genome-wide linkage of schizophrenia, and association in Alzheimer’s disease and schizophrenia. Of particular relevance ...
HNDC in Wichita
September 18, 2019 20:00 - 21 minutes - 18.9 MBNorberta Robertson, aka “Birdie”, began her involvement with HNDC many years ago as an event volunteer. Her interest in Huntington’s disease quickly moved forward in 2012 when she joined the HD Clinic Medical Team as a volunteer Social Worker for the monthly HD clinic. In late 2014, she stepped into the research arena in a clinical trial as a Capacity Rater. Looking for a change out of mainstream case management duties, in May, 2015, Birdie joined the staff at HNDC as a full time Social Worke...
National Suicide Prevention Week
September 11, 2019 17:30 - 31 minutes - 28.4 MBNational Suicide Prevention Week: https://afsp.org/campaigns/national-suicide-prevention-week-2019/ Resources: https://afsp.org/find-support/resources/ Suicide Prevention Awareness Month: https://www.nami.org/get-involved/awareness-events/suicide-prevention-awareness-month
HD Reach Pathways Program
September 04, 2019 20:00 - 22 minutes - 20.1 MBDebbi Fox-Davis has enjoyed a 23-year career leading and developing resources for nonprofits in North Carolina. Her career accomplishments include being the first Executive Director for Dress for Success of the Triangle; raising funding and engaging community supporters to ensure all children have permanent, safe and loving families for the Children’s Home Society of NC; raising scholarship and research funds for NC State University and running NC State’s Institute for Nonprofits online journ...
Good Samaritan HD Unit
August 21, 2019 20:00 - 26 minutes - 22.9 MBGwen has worked at the Good Samaritan Society’s University Specialty Center for the past 39 years. She is the nurse manager of the Huntington’s Unit. Gwen has been an advocate of HD for 23 years, helping residents and their families to navigate through issues surrounding long term care placement, supporting and educating staff on HD specialty care. Attends the HDYO North American camp as volunteer and is one of the camp nurse’s. Gwen also has served as a panel expert for the HDYO.org website...
Our Odyssey
August 14, 2019 20:00 - 30 minutes - 26.8 MBSeth Rotberg talks about his new organization, Our Odyssey.
EIP Pharma
August 07, 2019 20:00 - 26 minutes - 23.8 MBJohn Alam is President and CEO of EIP Pharma. Until May 2014, he was therapeutic area head for diseases of aging within Sanofi R&D. In that role he led global R&D activities at Sanofi directed at Alzheimer’s disease and Parkinson’s disease, as well as number of other age-related diseases. Previously, from 1997 until 2008 he held positions of increasingly responsibility at Vertex Pharmaceuticals, including Chief Medical Officer and EVP, Medicines Development. At Vertex, he played major roles...
Factor-H
July 17, 2019 20:00 - 21 minutes - 18.4 MBPlease join us as Ignacio talks about his organization Factor-H and how he is helping the HD community. https://factor-h.org/ To donate, please visit: https://help4hd.org/project-abrazos/ Also, for more information about "Dancing at the Vatican", please visit the following link
Resources with Jennifer Ruggiano
July 11, 2019 20:00 - 19 minutes - 17.2 MBFor more information about resources or contact information for Jennifer, please visit www.hdsa.org/epa
Brandon Pechette
July 03, 2019 20:00 - 33 minutes - 29.8 MBJoin us as Brandon shares his story about HD and the military
PACE HD
June 26, 2019 20:00 - 22 minutes - 19.7 MBCheney Drew is a research fellow and senior trials manager working in the Centre for Trials research at Cardiff University. She has a PhD in the neurobiology underpinning Huntington’s disease and now works as a clinical trials researcher, primarily focussing on trials concerning neurodegenerative disease, particularly HD. This includes trials of physical activity in HD and other complex interventions that may be used to modulate disease progression.
Resources in CT
June 21, 2019 19:00 - 15 minutes - 12.9 MBDebbie Pausig, LMFT, CT, is a Licensed Marriage and Family Therapist, a Certified Thanatologist, Professional Support Group Leader for HDSA CT-Chapter. Hospice Bereavement Coordinator for VNA Community Healthcare & Hospice. She is a National Speaker and Author of “An Affai? Worth Remembering With Huntington’s Disease, Incurable Love & Intimacy During an Incurable Illness.” She is the HDSA-CT Chapter Family Services Committee Chair and Education Committee Member. Debbie uses humor and compass...
Rachel Reimers & IVF-PGD
June 12, 2019 20:00 - 24 minutes - 21.6 MBListen to Rachel Reimers share her journey with IVF-PGD
Dr. Thomas Bird
June 05, 2019 20:00 - 28 minutes - 24.9 MBDr. Bird is a clinical neurogeneticist with interests in a wide range of hereditary disorders of the nervous system. In 1974, Dr. Thomas Bird founded the first clinic for adults with neurogenetic diseases in the United States. For more than 40 years, he directed this clinic at the University of Washington where he saw thousands of patients and conducted pioneering research on conditions such as cerebellar ataxia, movement disorders, hereditary neuropathy, muscular dystrophies, and familial de...
Kate Miner
May 22, 2019 20:00 - 29 minutes - 25.9 MBJoin us as we talk to Kate Miner for HD Awareness Month.
Shana Verstegen
May 15, 2019 20:00 - 28 minutes - 25.4 MBShana (Martin) Verstegen has many things to be proud of, but her work with the Huntington’s disease Society of America in honor of her mother will always top that list. Shana’s mother passed away from Huntington’s Disease in March of 2013. After growing up watching Debby Martin lose her ability to move independently, Shana strived to live every day to the fullest with a focus on movement – from being the first female pole vaulter at the University of Wisconsin, to winning 6 lumberjack world c...