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  • 00:50

    The HD View with Jimmy Pollard

    in Education

    Tuesday, April 14 - 3:30 pm

    The amazing, incredible, fantastic Jimmy Pollard is going to be with us tonight.  Jimmy has quite a speaking schedule these days and is on a mission to educate about clinical trials, namely Enroll HD (http://www.enroll-hd.org/), which is a worldwide observational study for Huntington’s disease families. This study will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD.

    Jimmy says, "No volunteers for studies, no more advances in the quest for a cure!" Enroll-HD

    Also find Jimmy's book on Lulu: "Hurry Up and Wait: A Cognitive Care Companion" (http://bit.ly/1DCUJmO)
    This book will give you a set of exercises to simulate the cognitive difficulties faced by those with HD, a collection of tips to accommodate them in your home or care home, a strategy to develop new approaches to solving care problems and commentary on common problems faced by family carers and those they love.

    Tune in and let's catch up with our most favorite man on the stand, Jimmy Pollard!

  • 01:02

    The HD View with Dr. George Yohrling

    in Science

    Tuesday, June 30, 2015 3:30 pm PST/6:30 pm EST

    HDSA's Senior Director, Mission and Scientific Affairs, Dr. George Yohrling will be with us to share information about HDSA's  newly launched HDTrialFinder.org site. Together with HD Drug Works, HD Buzz, HSG, Huntington Society of Canada, and CHDI, Help 4 HD International is proud to partner in this effort to bring education about clinical trials together in one place. It provides precise and strategic information to our HD community about clinical trials that they may qualify for in their area.

    This collaborative effort is a first to bring all the clinical trial information together on one site, a database where information may be called up according to the inquirer's specific location and criteria. Go to: http://hdtrialfinder.org/ and register.

    Other topics of discussion:

    HDSA's 30th Convention
    FDA PDUFA Meeting in September

    Tune in for a very special show with Dr. George Yohrling!

  • 00:55

    The HD View Ask Dr. Goodman

    in Health

    Tuesday, January 12, 2016 - 3:30 pm PST/6:30 pm EST

    Huntington's Disease Care
    Posted January 10, 2016 by LaVonne Veatch Goodman, M.D.

    There have been a number of studies about the impact and burden of Huntington's disease (HD) on both those affected and their family carers. Though there are many other factors, the major recurring theme boils down to "lack of care".  This includes lack of access to HD subspecialty medical care, lack of community medical or service provider knowledge about HD, and lack of support for family or other carers.  It is unfortunate that the magnitude of burden imposed by "lack of care" for HD has not substantially changed over the two decades or so covered in these studies.

    Tune in for a very interesting and eucational program.

  • 01:01

    The HD View Celebrates the JHD/HD Advocates

    in Moms and Family

    Tuesday, December 16, we are celebrating all of our amazing JHD/HD advocates who give of their time and energy so willingly and freely to make a difference for their loved ones and for our community members who are suffering from Juvenile Huntington's disease and Huntington's disease. Tonight we will be speaking with four incredible special guests: Stacey Sargent, Roberta Brink, Sharon Thomason, and Vicki Owen. We are so excited to be able to show our appreciation for all that they do AND for all that you all do for bringing awareness and advocacy to JHD and HD. Tune in for an incrediblly special program.

  • 00:51

    The HD View with First HD

    in Science

    Tonight our special guests are Dr. Samuel Frank - Associate Professor of Neurology and co-Director of Neurology Resident Education at Boston University and is involved with many HSG studies and trials, and Dr. David Stamler - Chief Medical Officer at Auspex Pharmaceuticals.  
    Tonight we will be discussing First-HD, which is 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 be enrolling participants across North America (United States and Canada) who have been diagnosed with HD and who have never taken tetrabenazine (Xenazine ®, Nitoman ®). Participants will be involved in this trial for approximately 4 months.
    Stay tuned and we look forward to having an awesome show tonight!

  • 00:41

    The HD View Ask Dr. Goodman

    in Science

    TUESDAY, DECEMBER 15, 2015: 3:30 PM PST

    The Huntington Study Group (HSG) hosted more than 400 attendees from around the world that included expert clinicians, researchers, and coordinators of clinical studies at their annual meeting in late October. Rounding out this group were representatives from several drug companies, and most importantly individuals and families affected by HD.  The highlights listed are just a few of the many presentations but are those that this author thought most important...

  • 00:53

    The HD View with Dr. Victor Sung

    in Health

    Tuesday, January 12, 2015 - 1:30 pm PST/3:30 pm CST/4:30 pm EST

    Dr. Victor Sung is Assistant Professor, Department of Neurology, Division of Movement Disorders at the University of Alabama at Birmingham. This afternoon we will talk about his HD clinic at UAB and the work he is doing with clinical trials.  Tune in to a very interesting and educational show.

  • 00:35

    The HD View Ask Dr. Goodman Show

    in Health

    What is Laqunimod?  Laquinimod is an experimental drug from TEVA Pharmaceuticals that has already been tested in previous clinical trials in several diseases including Multiple Sclerosis (MS).  This drug is thought to affect (or modulate) immune activity by shifting an injurious inflammatory situation to one that is more protective and anti-inflammatory. There is also evidence from various clinical trials that laquinimod may delay progression of disability in MS, and that it reduces brain atrophy as measured by MRI brain scans.  By reducing brain atrophy, this drug may have neuroprotective effects [Varrin-Doyer 2014]. This drug can trigger  protective neuron factors like BDNF (as measured in blood of MS clinical trial participants) that supports the health of neurons.  

    We will be talking about LEGATO-HD clinical research trial that will test the safety of Laquinimod.

  • 00:41

    The HD View with First HD Crew

    in Science

    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 enrolling participants across North America (United States and Canada) who have been diagnosed with HD and who have never taken tetrabenazine (Xenazine ®, Nitoman ®). Participants will be involved in this trial for approximately 4 months.
    For more information about First-HD you can contact the HSG directly: Toll-free number:  (800) 487-7671  (North America) OR email: info@hsglimited.org Visit: www.ClinicalTrials.gov

  • 00:51

    The HD View Ask Dr. Goodman Show

    in Science

    ON HELP4HD RADIO Tuesday, March 3, 3:30 pm PST/6:30 pm EST

    Dr. Goodman writes about the Pride-HD (Pridopidine) study in her recent article...

    "PRIDE-HD: Why We Should Bother"

    Recruitment is not going well for PRIDE-HD, an important clinical trial now enrolling for Huntington's disease (HD). Why is this?  Some think "why bother", particularly when testing a drug they may perceive as a failure in earlier trials. For some others, the trials may seem to too hard, too long, or not permit other drugs they are taking.  Still others are waiting for the gene therapy magic bullet they believe is just around the corner...

    Help4HD says, "Because we don't know until we try."

    Tune in to the show and let's talk about it!

  • The HD View with Dr. Kyle Fink

    in Health

    TUESDAY, SEPTEMBER 15 - 3:30 pm PST/6:30 pm EST

    Happy Tuesday everyone!  This is Melissa Biliardi, your host. Our call in numbers are 310-982-4227 or 877-497-4103.  When you call in press “1” and we will cue you into the show.  Thank you 95 thousand listeners for tuning in to Help4HD Radio. Five years ago I never dreamed that we would be closing in on 100 thousand listeners and 220 episodes. I am so proud and happy to be able to introduce amazing guests to you on each show that we do. Tonight is no exception. We have an incredible, intelligent and brilliant research scientist with us Dr. Kyle Fink, who is working with Dr. Jan Nolta in her Lab at the UC Davis IRC. He is working on research to prepare the very first ever Juvenile Huntington’s Disease Research Initiative with stem cell.

    Tonight we get to meet Dr. Fink and learn all about his work in Jan’s Lab. All of our hopes and fears lie with getting research funded through all the phases of clinical trials and to the market for our loved one who are suffering from this horrendous disease. Help4HD is taking a stand to support JHD research. Our very own President Katie Jackson held our first Help4JHD Kids Walk in June which was amazing. We were able to raise a small amount of money for Dr. Fink’ research. We know that without research and clinical trials, none of us will have a chance to help our HD community with treatments, therapies or the cure, so I hope there is someone listening out there who can help us too.

    Tune in to a very eduational,and inspirational show!