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TUESDAY JUNE 2, 2015 - 3:30 pm PST
Tonight we have a special show with two of Dr. Goodman’s incredible friends who are working directly with the homeless community in Washington State. As many of you know Huntington’s disease sufferers sometimes end up in homeless situations. Well, tonight we are going to meet Rev. Jim Bridges who does amazing work to help the homeless and we also get to hear from our super incredible Elizabeth Valenzuela again. You may remember when she was on the show a year and a half ago when we talked about how she found a man struggling with HD and living in very sad conditions. We have lots to talk about tonight! Let's get your questions ready for the experts on the state of homlessness.
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, 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
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
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:
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.
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.
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!
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!
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 firstname.lastname@example.org
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.
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.
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