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Tonight our special guests are 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 Dr. David Stamler - Chief Medical Officer at Auspex Pharmaceuticals.
Tonight we will be discussing First-HD, which is 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.
Stay tuned and we look forward to having an awesome show tonight!
Dr. Mary Edmondson, MD, Psychiatry from Duke University HD Clinic and HD Reach is back with us tonight. HD Reach is a non-profit organization dedicated to providing access to care, education, and social assistance to patients and families affected by Huntington’s disease in North Carolina. She will be hosting a symposium in November titled: “Neurodegenerative Disorders: The example of Huntington’s disease”. We will be speaking with her about some very important insights to care and clinical trials and her Pilot Project to increase awareness of Huntington’s disease. She has developed a very comprehensive multi-disciplinary system to foster an approach for living well with Huntington’s disease.
Tuesday, September 3, 2013
Tonight we will be discussing obsessive compulsive behaviors in Huntington's disease.
Read the article: Obsessive Compulsive Behaviors and Huntington's Disease http://hddrugworks.org/index.php?option=com_content&task=view&id=325&Itemid=30
Obsessive compulsive behaviors (OCBs) occur frequently in Huntington's disease (HD) and can cause great distress. These behavior symptoms are often hard for patients and families to describe, and doctors often do not routinely ask about or treat them. It is important for you to recognize OCB symptoms and learn about treatment, because, though it is estimated that as many as 50% of HD patients experience these symptoms, a study of European HD specialty centers found that fewer than 2% were prescribed OCB-specific medications. This is unfortunate because OCB treatment can make a big difference in the quality of life for both HD individuals and care-partners.
Though there has been little research done on this symptom in HD, there is much you can learn from the experts…
Tuesday, September 15, 2013
It's time for The HD View Ask Dr. Goodman Show! Tonight we are going to be talking about substance abuse in Huntington's disease. Dr Goodman writes articles each month for Help 4 HD - The HD View to discuss on the Ask Dr. Goodman Show.
Find Dr. Goomans new article: http://bit.ly/1hR4zTp
Tuesday, July 23, 2013 - 3:30 pm PST/6:30 pm EST
Our incredible special guest tonight is Dr. Alicia Semaka, a Postdoctoral Fellow at the University of British Columbia. She received her MSc in Genetic Counseling in 2005 and her PhD in Medical Genetics under the supervision of Dr. Michael Hayden at the Centre for Molecular Medicine & Therapeutics in 2012. Her doctoral research focused on intermediate alleles for Huntington disease. Using a unique, multidisciplinary methodology that combined molecular and qualitative techniques, she generated new data on the frequency, haplotype, and CAG repeat instability of intermediate alleles and explored patient understanding and genetic counseling practices regarding intermediate allele predictive test results. Her research findings fill a significant gap in our knowledge on intermediate alleles and have important implications for predictive testing.
We will be discussing an overview of her research relating to implications for genetic counseling/predictive testing and the HD community and background information on intermediate alleles, CAG size range, repeat instability and factors that influence instability. Also topic for discussion, two family history case studies.
Monday, February 11, 20133:30 pm PT/6:30 pm ETTonight our dear friend Jimmy Pollard is back on the show with us. We will get to catch up with what he’s been up to in the last year. He is very involved in the history, culture, lore and folklore of Huntington’s disease working with the Woody Guthrie archives. We will get to hear about his latest project working in the archives. Interesting and poignant stuff! Stay tuned and welcome to The HD View…
"Help4HD - The HD View: Celebrating the Advocates"
Tuesday, October 22, 2013 is the premier of our new component of Help4HD Programming - "Help4HD - The HD View: Celebrating the Advocates." It is so important that we take the time to acknowledge and celebrate individuals within our community who advocate for Huntington's disease!
We are proud to have Kris Coasthunter King from Sheffield, England with us! Kris is an amazing advocate for Huntington's disease and is here tonight to share his story and connection with HD. Kris is an incredible athlete and in July 2014 has a plan to push his body to the limit, all to raise awareness and money for Huntington's disease.
Stay tuned for a great show!
**Due to technical difficulties, we have had to pull the audio for this episode. If we are able to restore it, we will let you know on our social media channels and website.**
(Click here to read our transcribed interview with The Hungry Hungry Games.)
In Episode 121 of Fireside Chat, we speak with the creators of The Hungry Hungry Games, a new [unofficial] live parody of The Hunger Games that's currently touring the country. We then go on to celebrate the news that Julianne Moore will be playing President Alma Coin in both installments of Mockingjay. Let us know your thoughts on this casting decision by leaving a comment on our website!
*FYI: We're giving away tickets to the U.S. premiere of Catching Fire! For more details and to find out how to enter, click here.*
Help 4 HD International is excited to announce that UC Davis will begin recruitment for PRE-CELL which is the lead-in observational study for their future planned stem cell trial for Huntington's disease.
Per Terry Tempkin (Clinical Project Manager): "UC Davis has received approval from the Institutional Review Board (IRB), to begin the observational PRE-CELL study."
Terry Tempkin went on to say: "We are excited to begin the project and appreciate everything the Huntington's disease community has done to help this project come to fruition. In addition to Dr. Nolta's scientific achievement, and Dr. Wheelock clinical experience, the HD community played an important role in giving a face to Huntington's disease. The UC Davis Stem Cell Project Executive Committee is very grateful to all of the people who showed up at CIRM public meetings, and created visibility through their activities to educate CIRM about the importance of funding projects to help find a treatment or a cure for Huntington's disease."
Tonight, our incredible special guest is Terry Tempkin from UC Davis Medical Center, and we will be discussing the latest and exciting news regarding PRE-CELL!
MONDAY, MARCH 4, 2013 3:30 PM PT/6:30 PM ETDr. Goodman will be talking about:Anosognosia is the medical term for lack of self awareness of one's own disability or disease symptom. This condition, which is different from denial, occurs in many brain diseases including Huntington's disease (HD). Anosognosia is caused by nerve circuit damage to brain structures that interpret and organize information. Lack of awareness in HD creates problems that can range from refusal of therapy: "I don't need t
Tuesday, July 16, 2013 - 3:30 pm PST/6:30 pm EST
Our incredible special guest tonight is Dr. Christopher Ross who is Professor of Psychiatry, Neurology, Pharmacology and Neuroscience at Johns Hopkins University School of Medicine, Director of the Division of Neurobiology, Director of the NINDS-funded Baltimore Huntington’s Disease Center, and Director of the Huntington’s Disease Society of America Center of Excellence at Johns Hopkins.
Tonight PI Dr. Ross will give us an update on the HSG clinical trial PREQUEL. The results are in on this CoQ10 trial.