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Tuesday, April 14 - 3:30 pm
The amazing, incredible, fantastic Jimmy Pollard is going to be with us tonight. Jimmy has quite a speaking schedule these days and is on a mission to educate about clinical trials, namely Enroll HD (http://www.enroll-hd.org/), which is a worldwide observational study for Huntington’s disease families. This study will monitor how the disease appears and changes over time in different people, and is open to people who either have HD or are at-risk. Monitoring people over time in a real-world setting contributes to scientific knowledge. The study is designed to accelerate the discovery and development of new therapeutics for HD.
Jimmy says, "No volunteers for studies, no more advances in the quest for a cure!" Enroll-HD
Also find Jimmy's book on Lulu: "Hurry Up and Wait: A Cognitive Care Companion" (http://bit.ly/1DCUJmO)
This book will give you a set of exercises to simulate the cognitive difficulties faced by those with HD, a collection of tips to accommodate them in your home or care home, a strategy to develop new approaches to solving care problems and commentary on common problems faced by family carers and those they love.
Tune in and let's catch up with our most favorite man on the stand, Jimmy Pollard!
What is Laqunimod? Laquinimod is an experimental drug from TEVA Pharmaceuticals that has already been tested in previous clinical trials in several diseases including Multiple Sclerosis (MS). This drug is thought to affect (or modulate) immune activity by shifting an injurious inflammatory situation to one that is more protective and anti-inflammatory. There is also evidence from various clinical trials that laquinimod may delay progression of disability in MS, and that it reduces brain atrophy as measured by MRI brain scans. By reducing brain atrophy, this drug may have neuroprotective effects [Varrin-Doyer 2014]. This drug can trigger protective neuron factors like BDNF (as measured in blood of MS clinical trial participants) that supports the health of neurons.
We will be talking about LEGATO-HD clinical research trial that will test the safety of Laquinimod.
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!
Let's talk about caregiving! Tune in today as we talk with Dr. Goodman about the challenges of caregiving for our HD and JHD loved ones. Many of us are dealing with so much loss before the loss and after the loss of our loved ones. If you are a caregiver you know what I'm talking about. One person states, "On top of the personal stress, there is also the stress of maintaining one's home: replacing broken glass, punched doors, cleaning the furniture, not having friends over as often which lends into losing many people. Many of these "things," which is actually part of one's home community, go to pot so to speak. Even the outside of the home becomes shabby....all this lends to the stress of a caregiver."
In trying to identify how many of us are caregiving, I found that it's really impossible to know the numbers because of the level of stress that the caregiver is under 24/7. This stress does not let up; it only intensifies. Those of us who are under this kind of stress don't have time to answer surveys or polls. The question is how can we live like this? Who will help us? It's our own community who are so giving and caring and supportive, that's who.
Thank you HD Community for all that you do; for your committment to help others. You are amazing!
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.
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, 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, MARCH 31 - 1:00 PM PST
Tonight our incredible special guest is Patricia Ortiz, Vice President of Patient Liaison at Rare Diseases Patients First! a nonprofit organization that focuses on educating patients with rare diseases about the clinical trial and drug development processes.
Patricia Ortiz began her professional career working at the National Metrology Institute in Germany and has expertise in many different engineering disciplines including precision engineering, nuclear physics, and quantum optics. Later she shifted her focus to Biomedical Engineering. Upon completing her Master’s Degree in Biomedical Engineering at the University of Applied Science in Luebeck, Germany she has worked for large medical device and biotech companies as well as small startups, leading cross functional team in medical software and diagnostic instrument development within the US and overseas.
Rare Diseases Patients First! is a nonprofit organization that was founded by Dr. Lorna Speid in 2014 and focused on educating patients with rare diseases about the clinical trial process and drug development.
Visit their Facebook page: https://www.facebook.com/rarediseasesPF
Visit their Twitter page: https://twitter.com/rarediseasesPF
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
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.