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  • 00:42

    The HD View with Trey Gray & Doug Michael

    in Motivation

    Tonight, we have two very incredible special guests here with us to share their story and mission to raise research dollars to find the cure for Huntington’ disease. Trey Gray (touring drummer in Nashville) and Doug Michael (recording engineer), best friends since their teenage years; compadres in music, and now connected forever in the life battle that Trey must endure with Huntington’s disease. Both are determined to fund research and dedicated to raising awareness about Huntington’s disease. They are raising $55,000 that will be donated directly to "The Trey Gray Fund for Huntington's Disease" at the Vanderbilt University research center for HD. Doug will be riding a bicycle 3,500 miles from Los Angeles to New York to raise awareness and money for this very important cause. Trey will be following Doug in the chase vehicle and at times he will be riding along.


    Tune in on Thursday to hear all about this amazing fundraising campaign for Huntington's disease awareness.


    CAMPAIGN LINK
    http://igg.me/at/HuntingtonsDisease


    FACEBOOK
    www.facebook.com/HuntingtonsDiseaseBikeforaCure


     

  • 00:49

    The HD View Ask Dr. Goodman Show

    in Health

    TUESDAY, FEBRUARY 3, 2015 - 3:30 PM PST/6:30 PM EST


    Tonight Dr. Goodman will be talking about aggression in Huntington’s disease. A recent article reports that aggression is common in individuals with Huntington's disease. Authors report rates of aggressive behaviors between 22% (for clinic patients) and 66% (for hospitalized patients) among individuals with HD. What do they mean by aggression, and how should we interpret these numbers? It is important to remember that aggression (as defined in this article) and violence are NOT the same thing.


    However, the most important thing to learn is not how often it occurs, but how we can understand, cope with and treat aggressive behaviors in HD.


    Article direct link: http://hddrugworks.org/index.php?option=com_content&task=view&id=349&Itemid=30


    Read Dr. Goodman’s articles at: www.HDDrugWorks.org

  • 01:01

    Understanding the Impact of Epigenetics, Ep 9

    in Fitness

    Meet our panel of experts:
     
    Kevin Cann - Many of you know Kevin from his writing on Breaking Muscle..
    Hayden-William Courtland - Hayden runs a well-known blog called Science for Fitness. 
    Shea Robison - Shea runs a website called the Nexus of Epigenetics.


    00:43 - Introduction to guests
    01:30 - The definition(s) of epigenetics
    04:51 - What makes a gene express itself
    07:06 - Gene inheritability in the context of politics and policy
    08:40 - How the fitness enthusiast can use epigenetics to help him or herself improve
    12:50 - Making as many good choices as possible to enhance positive gene expression
    14:00 - Nutrition and epigenetics - individuality and food quality
    16:18 - Epigenetics versus phenotype within fitness and exercise
    21:07 - Caution is required - the limitations of the correlational human studies
    23:56 - An example of a specific gene and it's expression - The Agouti gene
    27:22 - Research on Huntington's disease
    31:05 - Limitations of the research on Huntington's disease
    32:33 - Research on Type 2 Diabetes and leptin dysfunction
    33:44 - The developmental window -  the Dutch famine and the Överkalix study
    37:25 - Epigenetics as a major player - it's not just about genetics
    38:22 - Reversal of the effects of previous generations
    39:30 - Narratives that come from genetics and epigenetics and which will win out
    42:15 - Social responsibility and political implications of epigenetics
    43:44 - Difficulty of separating out genetics and epigenetics
    45:54 - Fears and concerning aspects of epigenetics
    48:55 - Most positive possible outcomes of epigenetics
    51:59 - Which aspects require more research
    59:22 - Websites and other details

  • 01:01

    The HD View Celebrating The Advocates PreRecorded

    in Health

    Hello everyone and Happy Holidays to all. Tonight we are re-running Celebrating The Advocates.These four amazine women who are JHD/HD advocates and caregivers deserve gold medals in my book. We wish to honor them and encourage them in this lifes journey. We all need to help and support eachother, especially at this time of year. Enjoy the show!


    Super incredible JHD/HD advocates tonigh:


    Roberta Brink
    Sharon Thomason
    Stacey Sargent
    Vicki Owen


     

  • 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.

  • 00:31

    Help 4 HD News Update with Frances Saldana

    in Health

    Tuesday, December 9, 2014 3:30 pm PST/6:30 pm EST


    With suprise guest HD researcher Dr. Leslie Thompson from the University of California at Irvine and Super HD Advocate Warrior, Frances Saldana, will be here to give us an update on HD research at UCI and the 10th annual WSCS (World Stem Cell Summit) that just happened in San Antonio, TX, December 3-5, 2014. Every year GPI (Genetics Policy Institute) has their summit which brings the best of the best of regenerative medicine, science and research from around the world together to meet and exchange information. 


    This year, the HD Advocate organizations: Help 4 HD International, Joseph P. Roberson Foundation and UCI HD Care were honored with the Inspiration Award: HD Advocacy Community. Help 4 HD VP, Katie Jackson, UCI HD Care President, Frances Saldana and Joseph P Roberson Foundation President, Judy Roberson accepted the awards.


    Tune in for some amazing information.

  • 00:55

    Help 4 HD News Update with Louise Vetter CEO HDSA

    in Health

    Help 4 HD News Channel has been in contact with Louise Vetter CEO and has offered HDSA a forum to give our community an update on its progress on programs, research initiatives, Centers of Excellence, Diplomat Program and more.  


    We will be discussing the following information:


    I.             HDSA Overall



    Implementation of Strategic Plan

    guides everything we do with clear goals and practices to support our mission


    The result: new advocacy, education and research programs to support HD families


    II.           Research



    HD Human Biology Project
    HDSA Research Webinars
    Don King Fellowships


    III.          Education & Community Support



    National Social Worker to staff Helpline
    Partnership with HDYO
    Resources regarding Caregiving, Longterm Care and Genetic testing
    New HDSA Center of Excellence grant program


    IV.          Advocacy



    HD Parity Act
    Social Security Administration
    US Food & Drug Administration


    V.           Importance of Community Engagement



    More HDSA Chapters & Affiliates
    More Team Hope Walks
    More visibility: Family is Everything as a new way of building awareness of HD to new audiences
    More participation in science:  Endorsement of Enroll-HD


    VI.          Closing thoughts



    The entire HD community shares a common goal – to end HD.  Together we are stronger!

  • 01:04

    Help 4 HD Interview with Dr. Andrew McGarry

    in Science

    Tuesday, November 18, 2014 – 3:30 pm PST/6:30 pm EST


    Our incredible special guest is Dr. Andrew McGarry from Cooper University NJ, who is Co-PI for the PRIDE-HD study in the USA, which is sponsored by Teva Branded Pharmaceutical Products R&D and coordinated by HSG (Huntington Study Group). We will be talking about the ongoing global research study, which is a Phase II clinical research study of an investigational drug called pridopidine in individuals who have a diagnosis of Huntington disease (HD); and how the results of this trial may help to guide the future treatment of Huntington disease.


    The purpose of this randomized double blind study is to see what effect the investigational drug, pridopidine, has on movement, thinking, and behavior, compared to placebo, in people with Huntington disease after 26 weeks of receiving either pridopidine or placebo. In addition, information will be collected about safety and tolerability of pridopidine in people with HD.


    Dr. McGarry works in the development and implementation of clinical trials in movement disorders and belongs to the American Academy of Neurology, Alpha Omega Alpha Medical Society, and the Movement Disorder Society.


    Tune in for an amazing and informative show!

  • 00:58

    The HD View Ask Dr. Goodman Show

    in Science

    TUESDAY, NOVEMBER 4, 2014


    Dr. Goodman writes, “Bummed" was what this author felt after the recent announcement of (HD).  We can put some positive spins on recent trial failures; we have learned how to run large clinical trials, we can learn from negative outcomes, and best of all hundreds of HD individuals are freed up to participate in other (potentially better) trials.  But the reality is that this is one more disappointing failure in an increasingly long string of negative trials. The community is bummed.  Saying it straight is better, helps us to get over it, get up and go on to what comes next.…


    We will be talking about the recent closure of the HSG clinical trial CREST-E. Send your questions and comments to melissa@help4hd.org 

  • 01:00

    The HD View with Dr. Claudia Testa Pre-Recorded

    in Health

    PRE-RECORDED - 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.

  • 01:00

    The HD View with Dr. Dan van Kammen & Dr. Lorna Speid

    in Health

     


    TUESDAY, OCTOBER 14, 2014


    We are very pleased to have Dr.’s Daniel Van Kammen and Speid with us tonight. Lorna Speid, PhD, is a pharmacist. She works in the pharmaceutical industry as a regulatory affairs and drug development consultant. She will be interviewing Dr. Daniel Van Kammen, a researcher in the area of Huntingdon’s Disease research.


    We heard from Lorna a few weeks ago when she discussed the clinical trial process, and informed consent in particular. Today, she will be interviewing Dr. Dan Van Kammen, thereby allowing us to get some insights into the field of Huntingdon’s Disease Research and where it is going.