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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!
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, 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
TUESDAY, MARCH 17, 2015 3:30 pm PST/5:30 pm CST
Tonight our incredible special guests are Dr. Peg Nopoulos, Sonia Slevinski and Jane Kerr from the University of Iowa. We will be talking about the clinical study called Kids-HD/Kids-JHD. This study is sponsored by CHDI and is an ongoing study to help determine what is the best care protocol for the care and assessment of JHD children. Tune in and bring your questions. Call into the show on these two numbers: 310-982-4227 or 877-497-4103.
Talk to you soon!
For more informationn about Kids-HD/Kids- JHD visit their website:
Tuesday, December 2, 2014 - 3:30 pm PST/6:30 pm EST
Tonight we will be discussing Dr. Goodman's latest article "2014: A Yin-Yang year for HD".
She writes: "Particularly during this past year, living with Huntington's disease (HD) has been full of its ups and downs. First there was the hope in ongoing clinical trials of both coenzyme-Q-10 and creatine. Then there was sadness and fear that came with their failures. And now hope is springing again for new drugs coming to clinical trials now that will take a few years to complete. No doubt this Yin-Yang cycle will continue for HD, just as it does for other diseases."
"However, there may be reason to believe in the chance of greater success this next time around."
Read her article: www.HDDrugworks.org
Tune in at 3:30 pm PST/6:30 pm EST
This show is part of the Leukemia & Lymphoma Society Patient Education Series.
Our special guest is Dr. Christopher Yasenchak from Compass Oncology in Portland, Oregon. Dr. Yasenchak received his M.D. from Pennsylvania State University. He continued his training at the Mayo Clinic College of Medicine and is board certified in hematology, medical oncology and internal medicine. His clinical focus is multiple myeloma, lymphoma, stem cell transplantation, gastrointestinal malignancies and clinical trials.
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.
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!
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