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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.
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!
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.
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
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
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!
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.
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.
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
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
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.
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.
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.
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.
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