• 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!

  • 00:39

    Help 4 HD News Update with First-HD and ARC-HD

    in Science

    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.

  • 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!

  • 00:51

    Help 4 HD News Update with First HD

    in Science


    PRE-RECORDED   - 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 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.


    Tonight listen to our special guests 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 David Stamler - Chief Medical Officer at Auspex Pharmaceuticals. 


    Help 4 HD International Inc. is thrilled to be working with Auspex and HSG as their premiere communications partner.

  • 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.

  • 01:05

    Happy Anniversary ~ Help 4 HD

    in Friends

    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: James@WeHaveAFace.org

  • 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

  • 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


     

  • 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.

  • 01:44

    HELP 4 HD ~ The HD View Premier

    in Health

    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.

  • 00:53

    Help 4 HD ~ 411 with James Valvano

    in Education


    PRE-RECORDED - April 2011


    Our incredible special guest today is the amazing James Valvano whom we all know and love as a true HD warrior. He has invited us into his psyche with his book One With The Blue and  brought us out of the proverbial closet with his films, The Faceless Faces of Huntington's Disease and The Faces of Huntington’s Disease: I Am No Longer a Faceless Face, by igniting the HD community all over the world on Facebook Vimeo and Youtube.


    James is so passionate and inventive about communicating with our H’Dears that he created James Talk Video, a weekly video blog and James Talk Info Bits which is all about what’s happening NOW in the HD world of advocacy. If you have ever heard the term, "I have Huntington's Disease, but Huntington's Disease doesn't have me"... it came from James Valvano and every bit of that is true!


    In this episode James talks about his advocacy work for Jane Kogan, Advocacy Manager at HDSA. Tune in for a really great show.


    Visit: www.WeHaveAFace.org

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