Help 4 Hd Live!

Deena is a wife and mother of three beautiful children. Her husband was diagnosed with HD two years ago and is now in the mid stages of the disease. Most recently, her youngest child was diagnosed with childhood-onset JHD at age 4. Her other 2 kids remain at risk for the disease. Deena lives in Florida, where she enjoys spending time with her kids, cooking, reading, and advocating for the HD community, with an emphasis on JHD awareness. Stacey Sargent is a wife and mother of two incredible children. Stacey is an RN and resides in Georgia. Stacey recently lost her son, Cory Sargent, to JHD. Cory had a smile that could light up a room. His mother is an amazing woman who is still a strong advocate for families that are living with JHD.

Therese Crutcher-Marin, who has a Masters in Health Care Administration, is retired from Sutter Auburn Faith Hospice, having worked in health care for twenty years. She is publishing her first non-fiction book, a heartfelt memoir, whose proceeds will be donated to the Huntington’s Disease Society of America. She lives in Auburn with her husband, John Marin, the surviving sibling of a family devastated by Huntington’s disease.

Tune in to hear Dr. Kyle Fink and Dr. Peg Nolpoulos give us a overview and answer questions about their presentations they recently gave at Help 4 HD International Symposium, Sacramento. https://vimeo.com/166162213 https://vimeo.com/166162226 https://vimeo.com/166162235 https://vimeo.com/166220289

Wednesday, May 18 at 1:00 pm PST/4:00 pm EST We are so honored and priviledged to have Dr. Nancy Wexler on Help4HD Live! The "Blond Angel" the "Gene Hunter" as she is so endeard by her subjects, has devoted her life and career as a Geneticist to finding a cure for Huntington's disease which took her mother and many other family members. Find her video interview on One on 1 Profile: Geneticist Dr. Nancy Wexler Leads the Fight Against one of the World's Most Dreaded Hereditary Diseases. Tune in for this momentous interview... Find more informaton about Dr. Nancy Wexler, President of the Hereditary Disease Foundation at http://hdfoundation.org/.    

The Huntington Study Group is a world leader in facilitating high-quality clinical research trials and studies in Huntington disease (HD). HSG has the first and largest HD clinical research network of over 400 active and compassionate investigators, coordinators, scientists and HD experts at over 100 HSG Credentialed Research Sites across the globe, dedicated to seeking treatments that make a difference and improving the quality of life and outcomes for families affected by HD. Ray Dorsey, MD, MBA, is the chair of HSG. Ray is also a Professor of Neurology and Director of the Center for Human Experimental Therapeutics and Center for Health and Technology at the University of Rochester Medical Center. Ray investigates new treatments for movement disorders and improves the way care is delivered for individuals with Parkinson and Huntington diseases and other neurological disorders. As an academic neurologist, he is pleased to have devoted much of his professional activities and energies to Huntington disease an

Join us to hear Dr. Goodman speak about psychosis. Pyschosis is a symptom associated with Huntington's disease that can have a great impact on familes. Psychosis, like many psychiatric symptoms, may have been symtom that was not talked about. It was often kept as a "family secret." It is a new day that we want to talk about psychiatric symptoms because our loved ones need help. The way we are going to get help is to talk about every symptom associated with HD and let our medical professionals know we need these symptoms addressed. We are thankful for Dr. Goodman to coming on the show and dicussing this very important topic.

In 1986, Jimmy Pollard, a special education teacher by training, found himself managing a specialist unit in a nursing home. Unaware of Huntington’s disease, he rejected for admission a young woman living with it. Her mother gently persuaded him to reconsider and admit her daughter. So began his career working with folks and family touched by HD. Jimmy became interested in how HD’s cognitive changes challenge both people living with it and their carers, and how care settings can accommodate the unique needs of people with HD. Walking beside Tony, Geri, Carol, Karen, John and Barbara as they travelled their HD roads for 15 years, he began to learn how these changes challenged them every moment and how they went about coping with them. He learned that listening to families and collaborating with professional colleagues is essential to better understanding and, most importantly, to improved care. In the intervening years, Jimmy has written “A Caregiver’s Handbook for Advanced Stage Huntington’s Disease” and “H

Liten to Katrina Hamel talk about all that is going on at Caring 4 HD Affordabilty Shop and Resource Center. 

We are exciting to have Lisa Davenport on Help 4 HD Live to talk about her great jouney to find her birth mother. Hear about her going back in time to the 1500's tracking her biologic families hystory trying to find one answer, who was her biologic mother? Lisa is a extrodaniery woman who is very brave and open about telling her fasinating story. Help 4 HD International was honored that Lisa agreed to write a chapter for us in "Life Interrupted" a noval published by Help 4 HD last year. Lisa story will grab you and take you on a ride of emotions. You feel through her story her frustrations, stregnth, sadness, and the joy in her finding her lost family. 

Hear Dr. Peg Nopoulos speak about an ongoing study run by her and her research team at the University of Iowa. The study looks at the brain structure and brain function in kids from Huntington's disease families to determine how the brain develops in those at-risk for Huntington's disease from childhood through the course of their lives. She will also speak to us about Kids-JHD and that study that is also taking place at the University of Iowa.  

We are excited to have Amanda Miller on the show!  Amanda has done wonderful things as far as supporting HD and JHD families. This is going to be a great show for JHD. Amanda has visited schools where a child with JHD is attending to talk to the school about JHD. This is just one of many examples of programs that Amanda has created to support our community. Amanda Miller has always had a bit of a soft spot for the underdog; as she puts it, those who could use a boost somewhere along the way in their lives. That desire to advocate for people and empower them is in part what led her to where she is today, as the UI HDSA COE’s social worker. “I feel like there’s a responsibility within our society to help take care of each other, and I’m comfortable doing that and enjoy doing that,” Amanda said. “I’m lucky I get to spend every day doing something that I’m passionate about.”  On the job since November 2012, Amanda provides social work services for persons and families impacted by HD in the state of Iowa. In addi

Tune in to hear Vicki  Owen and Deborah Bunting discuss all that they are doing to educate law enforcement in the state of Florida.

Sharon Thomason, managing editor at Help 4 HD, talks about her over 30 years of advocacy an being a HD caregiver. She will also speak about what it was like heading up "Life Interrupted." Sharon's son just went through a new genetic test that offers hope for helping treat psychiatric symptoms. As we all know, the trial and error process we have to go through when trying to find effective ways to treat psychiatric symptoms is incedibly frustrating. What if you could take a genetic test that will give the doctor answers on how to more effectively treat our loved ones. This is a new test and as always consult your physician to see if they believe this test would be right for you.      

Tune in to hear Dr. LaVonne Goodman speak about the psychiatric symptoms often associated with Huntington's disease. This is the first show to kick off a series of shows, "Breaking the Stigma, Let's Talk Psychiatric Symptoms."  One thing that was loud and clear at the FDA Patient-Focus Drug Development meeting this last year is HD families want the FDA to understand the challenges they face with the psychiatric symptoms. The Huntington's Study Group's annual conference had a whole session focused on this very subject. We are looking forward to hearing Dr. Goodman speak about this important topic.

Monday, February 29 at 3:30 pm PST/6:30 pm EST Join us for a really fantastic show with sisters Dr. Mary Edmondson and Ann Lassiter of HD Reach in North Carolina. Mary the founder of HD Reach and her group has been problem solving about what prevents the HD community from accessing care for their families in North Carolina. Tune in to hear about this very interesting and amazing work that they do in NC. Their motto is: "Access to care for all!" Call in numbers are 310-982-4227 and 877-497-4103...

Tonight our incredible special guest is Kevin McCormack, the communications director at CIRM, California’s stem cell institute. Kevin is also a dear friend of Help4HD and was a featured keynote speaker at our first symposium in 2014. He considers himself to be the official translator for the agency, working to turn complex language about equally complex science into everyday English that anyone, including Kevin, can understand. Before joining the agency he spent more than 20 years working as a journalist, most of that in TV news in San Francisco, California. There is a new leader at CIRM, President and CEO Randy Mills and a new strategic plan. The topic of tonight’s show is CIRM’s new Strategic Plan which aims to engage the patient advocate community to increase the number of clinical trials CIRM funds, to help recruit patients for those clinical trials and to help make changes in the way the FDA works in order to speed up the ability to move promising research into clinical trials in people So tune in for

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, 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 th

TUESDAY, OCTOBER 6, 2015 - 3:30 pm PST/6:30 pm EST We will be talking about Dr. Goodman's recent article: Antipsychotics and Tetrabenezine: More Rapid Pregression of HD? Dr. Goodman writes... In a recent publication in the Journal for Huntington's Disease, Tedroff and collaborators report that antidopaminergic (antipsychotic and tetrabenazine) drugs were associated with more rapid progression of Huntington's disease. Any study showing a factor associated with more rapid progression is important. However the question remains whether these medications "caused" the more rapid progression, or whether those on these medications had a more severe type of HD that would have progressed more rapidly with or without the medications. What is the take home message from this study for individuals with HD who are taking these drugs?   Tune in to the Ask Dr. Goodman Show. Get your questions and comments ready and call into the show: 310-982-4227 or 877-497-4103... You may also type in your questions in the chatroom whi