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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

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

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

You can find Leah's bio on capturingthecorners.com

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

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 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/  

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.

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