SORT BY Relevancy
"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!
Tuesday, October 1, 2013
Dr. Peg Nopoulos, professor in Psychiatry, Pediatrics and Neurology at the University of Iowa Hospitals and Clinics will be our incredible special guest tonight. She will be talking about Kids HD and Kids JHD and why the two studies are different. She will have returned from World Congress for HD with some very interesting information for us. Tune in for a very special update from our amazing, incredible Dr. Peg Nopoulos.
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…
in Rock Music
Hi all and welcome to another JCHC Slam and Dance Show hosted by myself, Donovan de Necker out of South Africa where we play hard music and share interviews I have had with bands and individuals within the Christian hard music scene.
Tonights guest is another good friend and stand up folk, Gary Trimble, of the solo punk project, The Plank Eyed Saints, If you enjoy bands like The Misfits, Ramones and The Huntingtons then you should look up the band camp link I have placed below at the end of the show discription. So looking forward to sharing that with you.
Bands you will hear on this episode: Close Your Eyes, Cleophus, Dependancy, Deliverance, Eyes of Servants, Frustuck, God So Loved The World, Plank Eyed Saints, Hippos of Doom, Heart Like War, Havalina Rail Co., Icon For Hire, Ishmael United, Joy Electric, Kevin And The Octives, The Way, Trans-Siberian Orchestra, The Band With No Name, Undercover, Witzend, XDisciple A.D.X, XLooking ForwardX, XSolidarityX, Embodyment, Queen City Saints, The Witness Protection Program, White Flags Burning, The Lead, Headnoise, Saint Hooligan .
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.
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.
MONDAY, April 1, 2013 3:30 pm PT/6:30 pm ET
It's time to ask Dr. Goodman "your" questions about the care and treatment of Huntington's disease...
Tonight the topic is "What's empathy got to do with it?" Read her article, ask Dr. Goodman "your" questions and listen to the show. Please tell all your colleagues, friends and family about Help 4 HD Radio and click follow on our show page to get email reminders of upcoming episodes.
Dr. Goodman's listeners have grown to more than 10,000 strong and every month you will get to have direct contact with one of the leading physicians who does care with empathy for our H'Dears and JH'Dears.
Thanks for tuning in. Talk to you soon!
Sunday, May 29 - Our incredible special guests are James Valvano (WeHaveAFace.org) and his A Team comprised of an incredible team of individuals within the Huntington's disease community. These individuals have joined the project to promote the film documentary, and to continue to provide valuable support to others within the JHD/HD community. Advocacy for Huntington's disease is a key part of our daily lives. WeHaveAFace.org was founded to increase international awareness of Huntingt
MONDAY, March 25, 2013
Our incredible special guest tonight is Dr. Neal Hermanowicz, Director of the Movement Disorders Program at the University of California at Irvine.
Dr. Hermanowicz is engaged foremost in patient care. He is a member of the Parkinson’s Study Group, The Huntington’s Study Group, the Dystonia Study Group, and the Multiple Systems Atrophy Study Group. Dr. Hermanowicz has been involved in numerous clinical trials and research in the area of movement disorders.
UC Irvine Medical Center’s Movement Disorders Services is a multidisciplinary practice that includes neurology, neurosurgery, nursing, physical therapy and nutritional counseling. Dr. Neal Hermanowicz, director, emphasizes that UC Irvine’s movement disorders specialists take a case management approach, which promotes communication among all the members of the team. This has a lot of benefits for patients with complex disorders like Parkinson’s disease, Hermanowicz says.
MONDAY, MARCH 11, 2013, 3:30 PM PT/6:30 PM ETOur incredible special guest tonight is Dr. Mary Edmondson. She is a physician/psychiatrist from Duke University, North Carolina and a founder of the North Carolina Center for the Care of Huntington's Disease NC-CCHD). She will be here to talk about strategies on how to communicate with people who are experiencing anosognosia [medical term for lack of awareness] and strategies to keep them engaged...with family and medical care. Dr. Edmondson als