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Host Kevin Willett is joined by Harlyene Goss from HD Merrimack. Created in 1996, Commemorative Bookmarks were designed to Celebrate Life - life of a loved one who died or a special event in someone’s life. The idea was to help people to design a bookmark that helped them remember the joy and impact the person or event brought to their life. People create their bookmarks with a selection of borders, symbols and poems. Having made thousands of bookmarks which bring solace and healing or joy and delight to families, HD Merrimack would be honored to help you create a keepsake for your family. For more information please vist her website at http://www.hdmerrimack.com/
For more information about the Friends of Kevin Networking Group and to see a list of upcoming events please visit our website at Http://friendsofkevin.com
Tuesday, January 12, 2016 - 3:30 pm PST/6:30 pm EST
Huntington's Disease Care
Posted January 10, 2016 by LaVonne Veatch Goodman, M.D.
There have been a number of studies about the impact and burden of Huntington's disease (HD) on both those affected and their family carers. Though there are many other factors, the major recurring theme boils down to "lack of care". This includes lack of access to HD subspecialty medical care, lack of community medical or service provider knowledge about HD, and lack of support for family or other carers. It is unfortunate that the magnitude of burden imposed by "lack of care" for HD has not substantially changed over the two decades or so covered in these studies.
Tune in for a very interesting and eucational program.
TUESDAY, DECEMBER 15, 2015: 3:30 PM PST
The Huntington Study Group (HSG) hosted more than 400 attendees from around the world that included expert clinicians, researchers, and coordinators of clinical studies at their annual meeting in late October. Rounding out this group were representatives from several drug companies, and most importantly individuals and families affected by HD. The highlights listed are just a few of the many presentations but are those that this author thought most important...
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!
The story of Bruce Rossmeyer is finally told. He made a name for himself in the motorcycle industry and the community where he lived and worked that lives on today. Many people have wanted to know more about his life and we at Talking Motorcycles are amongst them. Now we hear those stories and much more.
His passing sent shockwaves through the motorcycle industry and the Harley-Davidson community. He was killed enjoying his motorcycle and friends in Sturgis, South Dakota. Now, his daughter Shelly will discuss his life and business philophy and how the family endured the loss while remaining committed to the family busines and the motorcycle community at large. This is a story you want to hear and we hear it as well in the episode of Talking Motorcycles with Barry Boone powered by Crosley Brands!
Today Rossmeyers Harley-Davidson and Destinatinion Daytona plus their store in New Smyrna Beach, Florida are among the leaders in the industry in enhancing the buying and ownership experience for motorcyclist.
Additional thanks to: Russ Brown Motorcycle Attorneys, Dunlop Motorcycle Tires and The Harley-Davidson Motor Company.
TUESDAY, OCTOBER 27, 2015 - 3:30PM PST/6:30 PM EST
Death with Dignity Law is the topic of our show today. This is not an easy topic to talk about, unless, you are facing an ultimately fatal condition with debilitating pain and suffering which has no hope of improvement or cure. Some say this is a choice that we as humans should have, others say it’s playing God. Today’s discussion is going to take you on a journey to explore your own thoughts about what is right, wrong and what is humane and ultimately if this is something you would even consider. Many states now are signing Death with Dignity Law.
Our incredible special guest today is Mr. Alan A. Pfeffer, Esq. who has been lobbying our government to change the criteria for the right to die which is modeled on the Oregon model. Alan says, “I am advocating to get the pending legislation in NY on death with dignity modified so as to permit people with HD to take advantage of the mercy that the legislation is intended to provide. In all the bills throughout the country including what was just passed in California, people with H D are left out.” What? How are people with the worst disease known to man being left out of this law? Well tonight we are going to find out…
Help 4 HD International does not advocate for or against the Death with Dignity Law. Only that everyone should be informed about the subject matter presented in order to educate themselves. We thank Mr. Pfeffer for his courage to talk openly about this very sensitive topic.