Help 4 Hd Live!

MONDAY, MAY 21 - 2012, 3:30 pm PST/6:30 pm EST Steven Finkbeiner, MD, PhD  Director, Taube-Koret Center for Huntington's Disease Research Senior Investigator and Associate Director, Gladstone Institute of neurological Disease Professor of Neurology and Physiology, University of California, San Francisco Areas of Investigation Research in his laboratory focuses on molecular mechanisms of plasticity and neurodegeneration. A long- term goal of his research is to understand how neuronal activity elicits changes in gene expression that are important for learning and memory and aims to understand how an inherited genetic mutation leads to neuronal dysfunction and degeneration in Huntington's disease (HD). Dr. Finkbeiner will be with us to give us his research updates. Ongoing Studies C-terminus of the NMDA receptor couple Ca2+influx Gene targets of the NMDA receptor Subsynaptic protein translation in learning and memory Polyglutamine expansion degeneration in neurons Ubiquitination and proteasome funct

MONDAY, MAY 14 - 2012, 3:30 pm PST/6:30 pm EST Jimmy's career and interests center on creating, developing and/or managing health care and special education programs for folks with neurologic conditions and developmental challenges, as well as working in partnership with family carers and lay advocacy associations around the world to advance their causes of professional education and public awareness. In Special Education he's taught in classrooms and students' homes, supervised teachers and programs; and taught graduate-level classes in Child Development, Behavior Management, instructional Programming and teaching self-care skills. In Healthcare, I've managed programs and worked as a nursing home administrator. Today I work at Tewksbury Hospital here in Massachusetts as Director of Huntington's Disease Services. Most recently Jimmy's focus has been on the care of folks and families touched by Huntington's Disease in home, hospital, nursing home and assisted living settings. Find Jimmy Pollard on Facebook

MONDAY, MAY 7 - 2012 It's time for The HD View Ask Dr. Goodman show!

Monday, April 30, 2012 at 3:30 pm PST/6:30 pm EST Dr. Michael Geschwind is Associate Professor of Neurology and the Michael J. Homer Chair in Neurology. He received his MD and PhD in neuroscience through the National Institutes of Health-sponsored Medical Scientist Training Program at the Albert Einstein College of Medicine in New York. He completed his internship in internal medicine at the University of California, Los Angeles Medical Center, his neurology residency at the Johns Hopkins University School of Medicine in Baltimore and his fellowship in behavioral neurology at the UCSF Memory and Aging Center (MAC). He joined the Memory and Aging Center faculty in 2003 and is now an associate professor and holds the Michael J. Homer Chair in Neurology.  Dr. Geschwind's primary research interest is the assessment and treatment of rapidly progressive dementias, including prion diseases, such as Creutzfeldt-Jakob disease (CJD), autoimmune antibody-mediated dementias and encephalopathies.   He also has an activ

Monday, April 23, 2012 at 3:30 pm PST/6:30 pm EST Dr. Peg Nopoulos is with the University of Iowa and her primary work has been working in Neuropsychiatry at the HD Center of Excellence at the UI Hospitals and Clinics. Her research focuses on understanding brain and behavior, using state of the art brain imaging techniques, specifically Magnetic Resonance Imaging (MRI). She is here to talk to us about a recent brain imaging research study in children, adolescents and young adults who are at-risk for Huntington's disease.

Monday, April 16, 2012 at 3:30 pm PST/6:30 pm EST Dr. Paul Muchowsli is Associate Investigator at Gladstone Institute of Neurological Disease and Associate Professor of Neurology at UCSF in California. The major research goal of his lab is to understand the molecular mechanisims that underlie neurodegenerative disorders associated with protein musfolding and aggregation, focusing on Alzheimer's disease (AD), Huntington's disease (HD) and Parkinson's disease (PD). The long-term goal is to use information gained from mechanism-based approaches to identify novel therapeutic targets for small molecules that could prevent neurodegeneration in humans. This is going to be a very interesting and challenging episode.

Monday, April 9, 2012 at 3:30 pm PST/6:30 pm EST.   Our amazing guest tonight is Dr. Samuel Frank, Associate Professor of Neurology and co-Director of Neurology Resident Education at Boston University. Since completing his fellowship at the University of Rochester, he has been involved in many local and Huntington Study Group clinical trials and observational studies. He has served on multiple steering and data safety monitoring committees for clinical trials, has an active HD clinic at Boston Medical Center and serves as the inpatient neurology consultant for the specialized HD service at Tewksbury State Hospital. He also sees patients through the regional Veterans Administration hospital.  “Advanced stage HD patients are a forgotten population. Many doctors let patients drop off their radar screen once they get admitted to a long term care facility. In fact, patients that require 24 hour care can live for 5-10 years or longer. Patients also progress through those stages and patients and families still wa

  Monday, April 2, 2012 at 3:30 pm PST/6:30 pm EST   Our very own brilliant and dedicated Dr. LaVonne Goodman will be with us again to talk about how to treat depression, insomnia and irritability in Huntington's disease. We'll also talk to her tonight about the healing power of sleep.    Find her treatment guidelines for HD on www.wehaveaface.org/hddw and www.help4hd-international.org/resources.    Dr. Goodman is on the Help 4 HD app too! Tune in for a really informative show.

MONDAY, MARCH 26, 2012 Reach2HD is a Huntington's disease research trial sponsored by the Huntington's Study Group and Prana Biotechnology to study whether PBT2 (an investigational drug) is safe and effective and to determine if its effect on cognition and other symptoms including movement and overall function. Study requirements include 8 in-person visits over 6 months and examinations at no cost to you. If you have early to mid-stage Huntington's disease, are at lease 25 years old and if you have a study partner who can come with yo to some of the research visits, this study is for you! Visit: www.WeHaveAFace.org/hsg for more invormation or go to www.huntington-study-group.org. Call: 800-489-7671 if you want to talk to someone about this study. This study is also available in Australia.

Saturday, March 24, 2012 ~ Our second show with the super moms of JHD. Let's talk!

Monday, March 19, 2012 at 3:30 pm  Back by popular demand and for those of you who couldn't tune in on Friday, this is a show you can not miss... Announcing James Valvano's The Huntington's Disease Project lottery winners... And lots more... HAPPY ANNIVERSARY TO YOU!

Friday, March 16, 2012...  marks the one year anniversary of James Valvano's WeHaveAFace.org. Let's honor this amazing person who has a very huge heart for juvenile Huntington's disease and Huntington's disease advocacy.  James was born and raised in New York to a loving couple Amelia and Joseph Valvano and now lives with them in Florida. Diagnosed with Huntington's disease in 2009, he vowed to use his talent of film making and production to record his advocacy mission and share it with the world. He first coined the phrase "I have Huntington's disease...but, Huntington's disease doesn't have me!"  And that's how he lives every day. WeHaveAFace.org was launched on March 10, 2011. From this humble beginning he now has a team of eight super JHD and HD advocates who work together on numerous advocacy projects. He has literally touched the world with information, education and resources relating to JHD and HD through his films, website and the very first app for Huntington's disease awareness called "Help 4 HD"

Monday, March 12, 2012 Our incredible special guest is Jan A. Nolta, Ph.D., the Director of the Stem Cell Program at UC Davis School of Medicine, and directs the new Institute for Regenerative Cures. The UC Davis stem cell program has over 150 faculty members collaborating to work toward stem cell-related cures for a spectrum of diseases and injuries. Dr. Nolta’s laboratory focuses on “bench to the bedside” research, and she has been involved in numerous clinical trials of cell therapy. In 1994 she developed her passion for cellular therapy by assisting with the first umbilical cord blood stem cell gene therapy trials for newborns with “bubble baby disease”, with her mentor Donald Kohn at Children’s Hospital of Los Angeles. A scientist with more than 20 years’ experience with human stem cells, Dr. Nolta has published over 100 manuscripts in the stem cell field and has authored 25 book chapters. She has served on over 200 grant review panels for the National Institutes of Health and other agencies, is Editor

MONDAY, MARCH 5, 2012 at 3:30 pm PST/6:30 pm EST It's time for The HD View ~ Ask Dr. Goodman Show!   Tonight we get to welcome back the esteemed Dr. LaVonne Goodman, Internist and owner of www.HDDrugworks.org, which she founded with her husband Nathan Goodman where at present their focus is providing information on present treatment options for Huntington's disease.    She says, “when I began taking care of Huntington's disease (HD) patients, I looked for standard of care guides to help me provide quality medical care.  What I found was lack of information…”    Dr. Goodman authored the original Treatment Guidelines for Huntington’s disease. A “Symptom Survivor” Guideline and Treatment guidelines for HD Obsessive Compulsive Behaviors, Irritability and Chorea. Find the original guidelines at www.WeHaveAfFce.org/HDDW.   Tonight we are going to talk specifically about numerous symptoms and treatments for Huntington's disease. We welcome your questions either by email message through my website www.Help4HD-Inte

Monday, February 27, 2012 -  Our incredible special guest tonight is Dr. Ellen G. Feigal, Senior Vice President, Research and Development at the CIRM, the California Institute for Regenerative Medicine.  Prior to joining CIRM in January, 2011, she was Executive Medical Director, Global Development, at Amgen,where her primary focus was in clinical development of therapeutics in hematology/oncology. She also led the scientific/clinical interface with patient advocacy organizations, formalized the company’s policy on expanded access to therapies for those with limited or no treatment options, and led the cross-functional teams to the company’s first collaborative research and development agreement with the National Cancer Institute.    From 2007 until joining CIRM, Dr. Feigal was adjunct professor and founding Director of the American Course on Drug Development and Regulatory Sciences, UC San Francisco, School of Pharmacy. The course, developed under her leadership as a collaborative effort with the FDA, UCSF’

Monday, February 20, 2012 - Our incredible special guest is Sean Thompson, Public Relations Coordinator for the University of Iowa Center of Excellence and the PREDICT-HD study. Sean leads multiple efforts aimed at informing our HD community of opportunities to participate in studies like PREDICT-HD and he keeps our HD community up to date on advances being made because of people’s willingness to participate in research studies. He really likes using YouTube and Facebook to reach our community and he’s enjoyed meeting people at several national and regional HD conventions and fundraisers and he has been heavily involved in organizing Hoop-A-Thon fundraisers for the Iowa Chapter. Sean came to healthcare public relations after starting out in journalism as a newspaper reporter in Wyoming. He currently resides in Iowa City and also hosts a radio program with his brother at UI.

SATURDAY, February 18, 2012 - (10AM PST) - (1PM EST) We are so proud and pleased to have special guests: Janice Stephens, Tina Wooldridge, and Sherry Dempsey Byram with us to discuss their experiences with JHD.  This is a very special "Help 4 HD - The JHD View" - We will be talking with our special guests about our JH'Dears and expressing our feelings, experiences, and hopes for the future!   It is our honor to have this discussion and we hope that you tune in and participate!  

Monday, February 13, 2012 - (3:30PM PST - 6:30PM EST - 11:30PM UK) Our incredible guest is Clare Gibbons a Genetic Counselor at North York General Hospital.  Clare Gibbons obtained a Master of Science degree in Genetic Counseling from Sarah Lawrence College in 1996. She is currently an American and Canadian Board certified genetic counselor and works at North York General Hospital in Toronto, Canada. She has been a member of the multidisciplinary HD clinic at North York General Hospital for 12 years. She provides genetic counseling to people undergoing genetic testing for HD and also provides support and resource information to people being followed in the HD clinic. Recently, Ms. Gibbons has become more actively involved in a number of HD related research projects. In particular, she is working with a Masters student who is doing her thesis project on the challenges parents face when talking to their children about HD.  Stay tuned!

Monday, February 6, 2012 - (6:30PM - EST) It's time for The HD View ~ Ask Dr. Goodman Show! Tonight we will be talking about the forth component of Huntington's Disease which our incredible special guest suggests is stigma. Dr. Lavonne Goodman states Huntington's disease is commonly characterized as a trilogy of overlapping disorders that include cognitive, motor, and psychiatric components, but advocates that we should add HD stigma to the list. The stigma part of the HD has great negative impact on many, but it is not well studied or recognized for the toxic part it plays through every stage of this disease. Perhaps, if we thought of stigma as an official part of HD, it might get the attention it deserves. Read her article 'Stigma: The Fourth Component of Huntington's Disease'  http://hddrugworks.org/index.php?option=com_content&task=view&id=307&Itemid=30

  MONDAY, JANUARY 30, 2012 - Our incredible special guset is Dr. Mary Edmondson, a medical physician and a psychiatrist from Duke University, North Carolina who is also a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD), a new and exciting organization that provides education, medical and social service care for Huntington's (HD) families in North Carolina.  And very importantly she 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. This is going to an excellent program with great advice from a really great lady.