Help 4 Hd Live!

Monday, January 23, 2012 - Tonight our incredible special guest is Judy Roberson from Sacramento, California. We want to thank her for the advocacy work she has done for many years for Huntington’s disease. Tonight we honor Judy Roberson, President of the Joseph P Roberson Foundation. She is an HD advocate extraordinaire with a flare and she is here to talk about her role as President of JPRF. Judy worked as a surgical nurse in ICU at the VA Hospital in Palo Alto several years ago. Her husband Tim was diagnosed with HD at age 36, passed away 8 years ago leaving her and 4 children. She is a retired volunteer of 15 years with the HDSA Northern California Chapter and her new role is patient advocate for CIRM (California Institute for Regenerative Medicine). She has done legislative advocacy work for HD in Sacramento and she is the first voting patient advocate for HD with the FDA. We are excited and thrilled to have Judy with us tonight. Website: www.jprobersonfoundation.org TOPICS FOR DISCUSSION TONIGHT: IVF

Tuesday, January 17, 2012 - Our incredible special guest is Carla Muller from A Place For Mom. The Nation's largest senior care information service, Carla with A Place For Mom is an amazing resource for assisted living and nursing home placement.    Carla Muller, has ten years of experience in the senior housing field. She has helped hundreds of seniors and their families find the kind of living that they want to improve the quality of their lives. She knows, from personal experience that even with all the information you may have, we all need guidance to navigate difficult waters. She works with that personal touch that comes from the experience of being there. Carla Muller Eldercare Advisor Santa Maria, California 1-866-344-3233 Visit:  www.aplaceformom.com

Monday, January 2, 2012 – Our incredible special guest is Dr. LaVonne Goodman who has graciously agreed to participate in our program series “Ask Dr. Goodman”. She is an expert in Internal Medicine and has treated Huntington’s patients for many years. Tonight’s topics will be IVF/PGD, termination and other options. These are very sensitive subjects for discussion, so we will take the utmost care and respect in the discussion panel segment of the show. We want to know from you, our listeners, what are your concerns or experiences about these topics? Send your questions to Melissa at [email protected] or visit www.help4hd-international.org to leave your comments there. Thank you as always for your interest in Help 4 HD and The HD View programming.

  Monday, December 26, 2011 - Back by popular demand, Dr. John La Puma a board-certified specialist in internal medicine and professionally trained chef will be talking about ways to help our H’Dear caregivers and community look, feel and live better through healthy eating and living. Recorded live on April 21, this episode is befitting to wrap up the year and start us out on the right path to a healthier and happier new year in 2012. We hope you enjoy this command performance. Happy New Year to all.

Monday, December 19, 2011 - Our incredible special guest is Dr. Christopher Ross, PI for the HSG sponsored PREQUEL Coenzyme Q10 study. Dr. Ross is Professor of Psychiatry, Neurology and Neurosciences at Johns Hopkins. In their study of neuropsychiatric disorders, Dr. Ross and his research team focus on Huntington's disease and Parkinson's disease, and use insights from these disorders to approach more complex diseases such as schizophrenia. They use biophysical and biochemical techniques, cell models, and transgenic mouse models to understand disease processes and provide targets for development of rational therapeutics. Ultimately, the neurobiologic study of schizophrenia many help illuminate normal thought, perception and emotion – and help us understand the biology of human nature itself. We as a community have many questions relating to CAG and the current diagnostic criteria at the COE's as well as clinical studies and trials. We have so many questions...but not enough answers! Our community wants to k

Monday, November 28, 2011– Our incredible special guest tonight is Katie Jackson, author of Ferris Wheel and advocate extraordinaire for Huntington’s disease. Katie is an inspiring author in Sacramento, California and she began writing Ferris Wheel in 2006.    Although Ferris Wheel is a fiction novel, many of the events in the book are actual experiences of the author. In 2006, Katie Jackson’s husband Michael discovered that he carried the same genetic neurological disease as his biological father; that of Huntington’s disease. Today there is no cure for Huntington’s disease and as can be expected, the diagnosis was life shattering and turned their lives upside down. Katie soon found that writing was the only way in which she could effectively cope with her husband’s diagnosis. Katie and Michael now have two beautiful children, Cooper and Madison, and currently reside in Northern California.

November 21, 2011 - Happy Anniversary Help 4 HD on Blog Talk Radio! Tonight we will be honoring Melissa Biliardi for her outstanding dedication and advocacy for the JHD/HD community!  Melissa is a pioneer!  A year ago, she made the decision to pilot the first radio show specifically for Huntington's disease. Her efforts have brought us insight, education, and so many valuable resources over the year! Her special guests are found all over the globe, and each of her shows provides us with hope!     Tonight, we get to thank an amazing individual, and a dear friend - Melissa Biliardi. Please tune in!  Feel free to email us and let Melissa know what her show has meant to you!   Your guest host: James Valvano Email: [email protected]

PRE-RECORDED: Our incredible special guest today is Stacy Brookhyser, mother of twins free of HD. She is a super duper proactive HD warrior who is spreading the word about a new procedure to stop HD in its tracks.   The Procedure: IVF/PGD Yes, you can stop Huntington's Disease in the future generations of your family! With the help of skilled medical professionals, YOU have the ability to prevent your children from inheriting HD. After in-vitro fertilization (IVF), embryos can be tested using pre-implantation genetic diagnosis (PGD) to determine their genetic makeup. When the embryos contain eight cells, they are tested for the HD mutation in the Huntingtin gene. Only embryos with the unaffected gene are transferred to the mother. These embryos will never get HD or transmit it to their children. The procedure essentially eliminates HD from that family line. Forever! Visit Stacy's website: www.hdfreewithpgd.com Contact: [email protected]  

Monday, October 31, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time – Tonight we will be highlighting an incredible book by author John Lerma, MD titled “Into The Light”. Maybe you’ve heard about this poignant book. It’s an accounting of real life stories about angelic visits and other pre-death experiences. If you haven’t already read it, this book comes highly recommended. It will leave you feeling uplifted in faith, hope and love. John Lerma, MD is the inpatient medical director for TMC Hospice in Houston. He has spent more than 10 years caring for terminally ill patients. The follow-up book to this one is titled, “Learning From The Light”, another highly recommended read. And in tonight’s episode of Halloween 4 HD we are going to talk about some very interesting accounts of visions and pre-death experiences of the paranormal kind. Some of these are just urban legends, but others are true and personal accounts from some of our own H’Dears. I know many of you have stories of your own to share and we would l

Monday, October 24, 2011 - Our incredible special guest is Dr. LaVonne Goodman from HD Drug Works. Though the HDSA has provided the "A Physicians Guide to the Management of Huntington's Disease" for more than a decade (3rd edition recently available), there have been no published guides that have been peer-reviewed by physician leaders from the EHDN or HSG.  Fortunately over the last 3 years both groups have spearheaded efforts within working-group committees to establish HD standard of care guides; however, this effort has proved difficult because individual experts may disagree, and there is lack of evidence from clinical trials to support any opinion. Though it isn't equal to an evidence base, expert experience can be valuable. As part of a project to help develop HD treatment guides, Dr. Goodman worked with EHDN and HSG doctors to identify (through surveys) the drug treatment patterns of a large number of international experts for three symptoms of HD.  And also important to getting this information out

Monday, October 17, 2011 – Our incredible special guest is Frances Saldaña Advocacy Chairman for the HDSA OC Chapter; Patient Advocacy Committee Member with the Sue and Bill Gross Stem Cell Research Center at UC Irvine; and she was Keynote Speaker at the World Symposium of the Huntington Study Group is October this year. Frances’ journey as an advocate for Huntington’s disease patients started thirty years ago, when her husband was given the fatal diagnosis of Huntington’s disease. With very elusive information and no real knowledge of what Huntington’s disease was, her primary concern at the time was simply survival. Beyond that, only the ability to focus on caring for her husband and her three young children remained. Behind her busy life was the subconscious knowledge that her three young children were now “ask risk” for inheriting the fatal disease.    Soon after the death of her husband in 1989, her youngest daughter started exhibiting symptoms of the dreaded disease, and Frances quickly launched an a

  Tuesday, October 11, 2011 at 6:30 pm ET/11:30 pm UK time - Our incredible special guest tonight is Matt Ellison, founder of HDYO (Huntington’s Disease Youth Organization). Launching in January 2012, HDYO is an organization that will focus specifically on supporting young people (kids, teens and young adults), all around the world, that are impacted by Huntington’s disease. The HDYO goal is to create and improve support for young people on a global scale. We hope to provide a place for young people everywhere to receive appropriate support and educational information with regards to Huntington’s disease. Ultimately HDYO aims to be a well-respected and trustworthy organization for young people and their families to access support. Multilingual site and content, thanks to the HDYO Translator Team! Brand new material created specifically for young adults, teenagers, children and parents. Content covering many of the issues young people face with regards to Huntington’s disease. Lots of videos and speeches!

Monday, October 10, 2011 - Our incredible special guests tonight are Jane Paulsen and Stacie Vik from the University of Iowa. UI is currently recruiting individuals who have shown features of JHD before the age of 20 to be a part of a Natural History Study to research the effectiveness of clinical measurements relating to Juvenile Hun tington’s Disease. This study will compare the current adult version of the Unified Huntington’s Disease Rating Scale (UHDRS ‘99) with a new modified version specifically developed for the JHD population. The purpose of this research study is to better understand JHD, and to improve the currently available tools to follow the course of the disease in this younger age group. Both parents and individuals affected by JHD who are interested in being involved in this research project are encouraged to contact Michelle Harreld at 319-384-1174 or [email protected] for more information. We will also be discussing the JHD Qualitative Study at the University of Iowa. Tune in f

Tuesday, October 4, 2011 – Tonight is the special premier of The HD View a new HELP 4 HD pilot program where we will be discussing current topics and concerns of the JHD and HD community. The goal is to get you talking about what matters to you. Let’s start talking about the unspoken issues that affect our H'Dears. It's time to step out of our comfort zone and talk about the real issues. Our incredible special guests on The HD View will be prominent people in the JHD and HD community who want to help us with the difficulties and personal struggles of HD. NOTE: The image of a knight slaying a dragon was my son, James’ idea. He says that we need to understand the nature of the monster or dragon as he sees it and we need to start talking about issues like PAIN. So, tune in to The HD View same time, same place, different format, but always in love, light and truth.

Tuesday, September 27, 2011 - Our incredible special guest is Joe Giuliano, Director of Clinical Operations at CHDI Foundation, Inc. He received his degrees in Chemistry and Nursing at the Catholic University of America in Washington, DC and trained in the Six Sigma and Lean Six Sigma methodologies. He applies these skills to develop more efficient clinical trial management processes. He joined CHDI in 2008. Joe has 12 years of experience in academic and pharmaceutical research and development. This experience included working with Contract Research Organizations (CROs) and covered a broad range of therapeutic areas including CNS and imaging diagnostics. At GE Healthcare, Joe was the Head of Clinical Project Management globally and where he led the Clinical Operations Team in North America. While at GE Healthcare, he successfully led a team that recruited and set up a global PET Investigator Network and was instrumental in formulating strategy for the development of the next generation of PET/SPECT imaging

RESCHEDULED FOR Tuesday, October 11, 2011 at 6:30 pm ET/11:30 pm UK time – Our incredible special guest tonight is Matt Ellison, founder of HDYO (Huntington’s Disease Youth Organization). Launching in January 2012, HDYO is an organization that will focus specifically on supporting young people (kids, teens and young adults), all around the world, that are impacted by Huntington’s disease. The HDYO goal is to create and improve support for young people on a global scale. We hope to provide a place for young people everywhere to receive appropriate support and educational information with regards to Huntington’s disease. Ultimately HDYO aims to be a well-respected and trustworthy organization for young people and their families to access support.

Tuesday, September 12, 2011 – Our incredible special guest tonight is Lauren Holder, woman on a mission to bring JHD/HD awareness and advocacy to the World. She is Chapter President of the HDSA North Carolina Chapter in Mebane, NC. She is also participating in the PREDICT-HD Study because she wants to contribute to finding treatments and a cure for HD. “Do it and help the HD community,” she says, encouraging others to take part in HD research. “We’re helping the researchers and we’re helping ourselves.” She is beautiful and humble; she is the epitome of love and strength. What an amazing young woman whom I am proud to know and love. "There are two types of people...those who live and those who live scared. You won't find me being the latter." Lauren Holder 2011

Tuesday, September 6, 2011 - Our incredible special guests tonight are Chris and Lorraine Stiehl who are the Patient Advocate Coordinators for CIRM - the California Institute for Regenerative Medicine - the state stem cell agency. This agency was created by Proposition 71 in 2004, when California voters overwhelmingly authorized a ten year bond issue of $3 billion for stem cell research. www.cirm.ca.gov Lorraine Stiehl has a long history as an employee and volunteer for health agencies and research organizations, primarily in diabetes. She was named "Employee of the Year" and "Volunteer of the Year" for the Juvenile Diabetes Research Foundation, and was just named to the JDRF International Board of Directors. She also established chapters for the Lymphoma Research Foundation. She also was heavily involved as a volunteer in the Prop. 71 campaign in 2004. Chris Stiehl is an independent consultant for Fortune 500 companies. He advises companies on how to listen to their customers and has written a book, Pain K

Monday, August 29, 2011 at 3:30 pm PT/6:30 pm ET/11:30 pm UK time– Our incredible special guest tonight is Diana Dunkelberger from the Paul Muchowski Lab at the Gladstone Institute, UC San Francisco in California. She recently received the HDSA Donald A. King Student Fellowship which gave her the financial resources to dedicate her summer to HD research. Diana aspires to become a Neurologist and conduct translational research, so she will be heading off to medical school in the fall. We are going to learn about her very special project: Investigating the Immune System and the Role of the Cannabinoid Receptor (Type-2) in the Pathogenesis of Huntington’s Disease. Diana will present comprehensive scientific information about her research. She is passionate about her work and says the main point to illustrate is that science isn’t big and scary,so this will definitely be a very educational and interesting episode.

Our incredible special guest is Elisabeth (Lisa) de Blieck, MPA CCRC is a Program Manager at the Clinical Trials Coordination Center (CTCC), which is part of the Center for Human Experimental Therapeutics at the University of Rochester. Ms. de Blieck has over 20 years of experience in administrative project management and clinical trials coordination. She has been the senior project manager for several past and ongoing industry and federally funded multi-center clinical trials in Pediatrics and Neurology, particularly in Huntington's disease. These studies, funded by the Maternal and Child Health Bureau, National Institute for Neurological Disorders and Stroke, and the Food & Drug Administration Office of Orphan Products Development, have involved the collaborative efforts of individuals within a number of study groups, including the Huntington Study Group, Parkinson Study Group, Tourette Syndrome Study Group, Batten Study Group and the HIV/AIDS Neurologic Consortium. She has also served on the protocol r