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Happy Tuesday everyone! Tonight we are going to get an update on the HSG Clinical Trial for Huntington's disease called First-HD and ARC-HD. Our incredible special guests are:
Samuel Frank, MD – First-HD and ARC-HD PI
Claudia Testa, MD, PhD – First-HD and ARC-HD co-PI
David Stamler, MD – CMO Auspex Pharmaceuticals
Sarah Janicki, MD, MPH – Site Investigator, Columbia for First-HD
We will be discussing the changes to the First-HD protocol with more sites added to help increase participation. We will also be talking with a site investigator, coordinator, and caregiver to get their perspective on how to make clinical trials a more positive experience for everyone.
Tonight we will talk about preimplantation genetic diagnosis or (PGD) for Huntington’s disease with Dr. Goodman. Read her article on www.HDDrugworks.org titled: PGD for the Prevention of HD. http://hddrugworks.org/index.php?option=com_content&task=view&id=336&Itemid=30
“For more than a decade, couples at risk for Huntington's disease have had the option to conceive an unaffected child by utilizing the reproductive process of preimplantation genetic diagnosis (PGD). If PGD became common practice in HD, it could eliminate the majority of disease for the next generation. So if PGD has the potential to mostly "wipe out" HD for the next generation, why is it so rarely utilized?”
We will discuss the pros and cons of this novel approach to eliminating HD for every in the generations to come. Tune in to a very interesting and informative program with Dr. LaVonne Goodman.
TUESDAY, JUNE 17, 2014 Our incredible special guest is Claudia Testa, MD, PhD, Associate Professor of Neurology, and Associate Director of Clinical Research and medical director of the new VCU Parkinson's and Movement Disorders Center. The Center aims to integrate research, clinical care, and education and outreach missions in an interdisciplinary collaborative approach to making a difference in movement disorders. Dr. Testa moved to VCU in 2011, where she is excited to lead a new Huntington disease program.
We will be discuss her career of care and research. Read more...
After completing her MD and PhD degrees, Dr. Testa returned to Boston for internship at Beth Israel Hospital, then neurology residency in the Partners program at Massachusetts General Hospital and Brigham and Women's Hospital, where she was a chief resident her final year. She moved to Emory University for a movement disorders fellowship and basic research with Dr. Timothy Greenamyre.
The HDSA Center of Excellence for Huntington Disease at Emory University was an important part of her growth as a clinician and scientist. Over eleven years at Emory she transitioned from fellow to faculty to medical director of the HDSA Center of Excellence, with involvement in several HSG studies. More recently, to enhance her skills in human disease based research she completed a Masters in Clinical and Translational Research (2012) while a faculty member at Emory University. Between Emory and VCU, she has over 13 years’ experience as an HD clinical study investigator, working with symptomatic, pre symptomatic, and HD at risk research participants. Her current research interests are in genetic causes and risks for essential tremor, Huntington disease pre-motor physiology changes, and Huntington disease observational and treatment trials.
We are talking about body discomfort in Huntington's disease. Like my sweet Jimbo, many of our HD and JHD individuals suffer from body pain. We must study this in order to find treatments and therapies.
Listen to Dr. Goodman speak about new studies concerning this horrific conditon in HD.
The radio/TV simulcast all about TV, presented live on BlogTalk Radio and Brooklyn Independent Media HD. Our guess: syndicated radio personality Russ Parr, director of Comeback Dad, UP's latest original movie (debuts July 12), and Comeback writer Kimberly Walker..
Tonight Dr. Goodman is back with us… we will be talking with her about the role we take as caregivers… the hazards and the rewards. Read her newest article “Caregiving: A Risky Profession?” posted on May 4th on www.hddrugworks.org.
Direct Link to The Article:
In this article she talks about “Caregiving for a person with later stage Huntington's disease is a loving long-term commitment that can bring rewarding fulfillment but sometimes may be hazardous to your health... She writes on, “What are the health risks of caregiving? What can be done to give some relief for caregiver strain?” Inquiring minds want to know… especially me! Welcome back to your show Dr. Goodman…
Let's get our questions ready...
Tuesday, November 12, 2013 Join us for an update on the HSG First-HD clinical trial with incredible special guests Jody Goldstein from Rochester and Greg Suter from the HNDC. First-HD is a Phase III clinical research trial of an investigational drug called SD-809 Extended Release (ER) in persons who have a diagnosis of Huntington disease (HD). First-HD will look at how safe, tolerable and effective SD-809 ER is compared to placebo (inactive drug) in reducing chorea. First-HD will be enr
THURSDAY - January 16, 2014 - 3:30 pm PST/6:30 pm EST It's time for an update from the CREST-E clinical trial with Bonnie Hennig. THE MISSION: To provide patients and families with information about CREST-E. The discussion today will be focused on providing a brief overview of the study allowing for an informal discussion about study participation and providing information about how individuals with HD and their caregivers can participate in clinical trials.
Dr. Karlene Richardson speaks with none other than New Kidz HD. Get to know the man behind the gift and the lyrics. Hear his thoughts on what inspired In My Eyes. An intimate conversation that draws you into the world of a talented Jamaican artiste, leaving you anticipating exactly what is to next to come!
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