Help 4 Hd Live!

Tune in to hear Dr. Nicolo Zarotti talk about some of his research.

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.

Our guest this week is Kinser Cancelmo. Kinser lost her husband to HD and her daughter to JHD. Meg was only 15 when she lost her battle with JHD. Kinser started the “Meg’s Fight for a Cure JHD Foundation” in memory of Meg to help raise research funds for a cure and to help other families affected by JHD. 

Join our host, as Ginnievive Patch discusses her recent article in The Huntington's Post about Survivor's Guilt. It is very common for family members that are HD negative to feel guilty about their results. 

Tune in to hear Vicki Owen, head of Help 4 HD International's LEEP program, talk about their recent experience exhibiting at Alabama Chief of Police Winter Conference.

Listen as Katie Jackson and our guest, Peter Deng discuss JHD and gene editing. Peter is a Doctoral Candidate in the Pharmacology and Toxicology program at UC Davis.  Currently, he is being mentored by Drs. Jan Nolta, Kyle Fink, and David Segal at the UC Davis Institute for Regenerative Cures and Genome Center.  His research is centered on the production and evaluation of a novel DNA-binding therapy for rare genetic diseases such as Huntington’s Disease.  He has previously been a recipient of a National Institute of Health-sponsored Pharmacology Fellowship, Ines McMillan Fellowship in Pharmacology, New Member Scholarship at the Huntington’s Study Group, and selected for Hot Topics in Neuroscience at Society for Neuroscience.  A native of California, Peter is highly interested producing impactful research as well as bridging the gap between science and the public through science communication.”

Terry has spent 18 years working at the University of California Davis HDSA Center of Excellence. 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. She has participated in 18 clinical trials targeting new treatments for HD. Although she retired from the health system in 2016, she did not retire from her passion to care for families coping with HD/JHD. Terry is currently an Executive Board Member for Help 4 HD International, and consults with the HDSA Center of Excellence program.

Tips for surviving the holidays

Join us as we discuss good gifts to give this holiday season

Dr. Bonnie L. Hennig-Trestman currently has a private tele-therapy practice and serves on the Board of Directors for the Huntington’s Disease Youth Organization (HDYO). Dr. Hennig-Trestman has over 30 years of expertise providing clinical service and supervision with patients and family members suffering from neurodegenerative, physical, and psychiatric illnesses. Her book, “Talking to Kids About HD: A book for people who know children with HD in their family” has been translated into five languages. She has provided educational lectures on talking to kids about HD as well as various HD related topics to national and international audiences. Dr. Hennig-Trestman has been involved in HD research conducting observational and clinical trials. She is a member of the Huntington Study Group (HSG), the European HD Network (EHDN), and the Huntington’s Disease Youth Organization (HDYO). 

Jordan Schultz, PharmD, graduated from the University of Iowa College of Pharmacy in 2013.  After completing a 2 year residency, he began providing clinical pharmacy services to patients with neurodegenerative diseases, including Huntington’s Disease.  In addition to his clinical work, Jordan conducts clinical research that is focused on (1) understanding the pathophysiology of Huntington’s Disease and (2) identifying environmental factors, including medications, that may modify the disease course of HD.

Katie, Lauren and Katrina talk about being thankful this holiday season

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.

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

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'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

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

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

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

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