Help 4 HD Live!
522 episodes - English - Latest episode: 6 days ago - ★★★★★ - 9 ratingsWelcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington's community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Katie Jackson each week for incredible programming and don’t forget to share this channel with your colleagues, family and friends. **Help 4 HD Live! is made possible through an education grant from Teva Pharmaceuticals and the Griffin Foundation. Thanks for tuning in! Help 4 HD International Inc.
**Please consult with you own physician for advice about any medical recommendation.
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Episodes
Before You Test
February 08, 2017 21:00 - 48 minutes - 43.4 MBTune in to hear this very important show. There are so many things to think about before you take the step to be tested for Huntington's disease. Dr. Bonnie Hennig is coming on Help 4 HD Live! to talk about some of those things we need to think about. Dr. Hennig is the Director at the UConn Health Huntington’s Disease Program. She has over 30 years of experience as a clinical therapist and has worked with people who have HD and their families since October 1999. Dr. Hennig provides couns...
Ask Dr. Goodman: GI and GU Issues Often Associated with HD
February 01, 2017 21:00 - 47 minutes - 42.2 MBTune in to hear Dr. Goodman answer questions from the community! Dr. Goodman will also discuss GI (gastrointestinal) and GU (genitourinary) issues often associated with HD.
An Interview With Brent Walker, Author of "Look Up" (Rebroadcast)
January 25, 2017 21:00 - 34 minutes - 30.7 MBBrent says, "I have always been very fond of writing and have written a lot of short stories in the past (I even wrote a screenplay once). but none of them have ever been published. For me it is very simple. I want to help people. I don't care about money; I never really have. "Most of my life, I have been haunted by this disease. For twenty years at least I have had the weight of this on my shoulders. For the most part, I did not talk about it much in those 20 years as I didn't want people ...
An Interview with Brent Walker, Author of "Look Up"
January 18, 2017 21:00 - 34 minutes - 30.2 MBBrent Walker watched Huntington's disease tear his family apart, although they didn't know at first that it was Huntington's disease. About 20 years ago, he became familiar with Huntington's disease and realized his father was at risk. He later found out that his father was HD positive, putting himself and his two siblings at risk. His journey compelled him to write a gripping short story, "Look Up," which will be published in three installments in The Huntington's Post. Brent is a talented w...
Capturing the Corners With Leah Amberly Barker
January 11, 2017 21:00 - 52 minutes - 47.5 MBLeah Amberly Barker describes herself as "a 24-year-old who’s still in college, a poet, an author, a spoken word artist, avid nail-biter, lover to the ocean in a fiery affair with the stars, a C- student, hoarder of antiques, seeker of soul mates, advocate for Huntington’s Disease, a definite dog person, Pepsi-over-Coke, sleep talking, manic, prideful little girl who has just about every mental illness in the books.Oh, and #HuntingtonsDisease." Tune in Wednesday, Jan. 11, at 4 p.m. Eastern/1 ...
Help 4 HD; A Look Back 2016, A Look Forward 2017
January 04, 2017 21:00 - 1 hour - 62.1 MBJoin us to hear an overview of some of Help 4 HD International's programs and projects we ran in 2016. We will also do a sneak peek of some things to come in 2017, including our 5th annual symposium
Celebrating the Season of Giving: An Interview With Kinser Cancelmo
December 28, 2016 16:00 - 42 minutes - 37.9 MBKinser became more involved with both HD and JHD after her daughter Meaghan passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband to HD shortly after she lost her daughter. While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD. The local radio station had Kinser on their morning talk show to speak about JHD. When Kinser lost her daughter and h...
A Season of Giving; Celebrating the Patient Advocate
December 15, 2016 03:00 - 27 minutes - 24.6 MBTune in to hear Havanna Lowe talk about her role as a patient advocate in the HD/JHD community. Havanna, who is 17, helps care for her aunt and her cousins while also attending school and working. She's a force to be reckoned with as she advocates for the HD Parity Act and sits on the board of the National Youth Alliance (NYA) at HDSA. In today's interview, Havanna shares what it's like to watch her family live with and pass away from HD and speaks passionately about the importance of HD yout...
Celebrating the Season of Giving: An Interview with Lauren Holder
December 07, 2016 21:00 - 27 minutes - 24.2 MBJoin us on December 7, 2016, to hear Help 4 HD International interview the amazing Lauren Holder. We are going to talk about Lauren's story, some of Lauren's advocacy projects she has done, and about her recent article in Good Housekeeping, "How a Genetic Test Changed My Life." Lauren Holder, from North Carolina, is well known in the HD community. She's been an active patient advocate for a number of years and was instrumental in developing HDSA's law enforcement education program and has con...
WAVE Lifesciences
November 30, 2016 21:00 - 30 minutes - 27.2 MBWAVE Life Sciences is a preclinical genetic medicine company focused on advancing first-in-class or best-in-class stereopure nucleic acid therapies for patients impacted by rare diseases. We are utilizing our innovative and proprietary synthetic chemistry platform to design and develop nucleic acid therapeutics that precisely target the underlying cause of rare genetic diseases, with a goal of delivering new and exceptional treatment options for patients. Given the versatility of our chemistr...
#I'MNOTDRUNK: AN INTERVIEW WITH ASHLEY CLARKE
November 23, 2016 21:00 - 45 minutes - 40.8 MBIntro into Ashley Clarke's Blog: https://kyraashley.wordpress.com/ They say there’s a reason for everything. So there must be a reason my life is affected by Huntington’s Disease. And that is the reason for this blog. My name is Ashley. And I have a story to tell… At 15 years old, I found out that my father had Huntington’s Disease. It was very hard to come to terms with, and at that point, my father and I weren’t exactly on great terms, due to what the condition was doing to his mind. ...
Death with Dignity: A Discussion with Alan A. Pfeffer, Esq.
November 14, 2016 23:30 - 1 hour - 60.6 MBShould people who are suffering from terminal illnesses be allowed to choose death with dignity? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication? Retired attorney Alan A. Pfeffer, Esq., joins us to talk about this sensitive and controversial topic. Unless you are facing a terminal illness with debilitating suffering that holds no hope of relief or a cure, assisted suicide can be a difficult t...
Death with Dignity: A Discussion with Alan A. Pfeffer, Esq.
November 14, 2016 23:30 - 1 hour - 60.6 MBShould people who are suffering from terminal illnesses be allowed to choose death with dignity? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication? Retired attorney Alan A. Pfeffer, Esq., joins us to talk about this sensitive and controversial topic. Unless you are facing a terminal illness with debilitating suffering that holds no hope of relief or a cure, assisted suicide can be a difficult t...
LEGATO-HD
November 09, 2016 17:30 - 35 minutes - 31.6 MBJoin us to hear Dr. Anderson and Dr. Feigin give us a update on LEGATO-HD.
WAVE Life Sciences: Clinical Trial Coming Soon!
October 20, 2016 18:30 - 29 minutes - 25.8 MBPre-recorded at WAVE Life Sciences headquarters in Cambridge, Massachusetts, Katie Jackson interviews three of the leaders of this inspiring 10-year-old company. Paul Bolno is the CEO, Michael Panzara is the head neurologist, and Wendy Erler is the vice president of patient advocacy. WAVE is advancing a diverse pipeline of stereopure nucleic acid therapeutics across a broad spectrum of rare genetic diseases, including Huntington's disease. They share with us the exciting news about their alle...
Help 4 HD Live, HDYO
October 12, 2016 20:00 - 29 minutes - 25.7 MBJoin us to hear all about what is going on at HDYO. The Huntington's Disease Youth Organization (HDYO) is a non-profit voluntary organization that provides appropriate information and education, along with support for young people impacted by Huntington's disease.
National Organization of Rare Disease (NORD) on Help 4 HD Live!
October 04, 2016 20:00 - 41 minutes - 37.3 MBNORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 250 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Help 4 HD International Symposium 2016, Florida
September 28, 2016 20:00 - 39 minutes - 35.7 MBJoin us to hear about all the exciting speaker and activities that are taking place at this years annual symspoium in Florida. https://www.research.net/r/symposium-registration
Scottish Huntington's Association Youth Project
September 21, 2016 20:00 - 40 minutes - 36.5 MBSHAYP (Scottish Huntington's Association Youth Project) has existed for 15 years and provides support to young people aged 8-25 living in families impacted by Huntington's disease throughout Scotland. SHAYP provide one to one support, group work sessions, group activities, residential camps and summer camps throughout the year, along with providing telephone/email/text support and social media interaction. Kirsten Walker is the project manager for the service providing support to young peopl...
Help 4 JHD Live: Lisa Mooney
September 14, 2016 20:00 - 42 minutes - 38 MBJoin us to hear Deena Cannastraci interview social worker Lisa Mooney from UC Davis about topics that will help families living with a child with Juvenile Huntington's disease.
Ask Dr. Goodman: The Problem(s) with Drug Treatments for HD
September 07, 2016 20:00 - 41 minutes - 36.8 MBTune in to hear Dr. Goodman speak about Akathisia. Akathisia isa state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic drugs. visit www.hddrugworks.com to read the whole article about "The Problem(s) with Drug Treatment for HD."
Be HD Aware, Live for Life Foundation
August 31, 2016 20:00 - 46 minutes - 42 MB2010 was the start for all involved with the foundation, Talks with MPS; Angela Constance, Fiona Hislop and then Scotland's First Minister; Alex Salmond to ask them to support our foundation so we could achieve our goals and let Scotland be HD / JHD AWARE. The foundation was awarded charity status April 2011. 2016 Scotland first minister Nicola Sturgeon is well aware of the work the foundation carries out due to Annie MacKenzie having the opportunity to meet the FM had two event for cares o...
Florida's Annual Summer Police Chief's Conference and Exposition
August 24, 2016 20:00 - 31 minutes - 27.9 MBTune into to hear about all that went on at this years Florida's Police Chiefs Conference. Help 4 HD International had a booth there and was able to bring HD awareness to this very important event!
Roshni Bhatt Joins Help 4 HD Radio to Discuss Her Research in India
August 17, 2016 20:00 - 34 minutes - 31 MBWe are excited to have Roshni Bhatt on Help 4 hd Radio to dicuss her research and background in studying Huntington's disease. Here is Roshni Bhatt'sresearch interest from her CV. Research Interest: I have designed an in-silico biochemical pathway for inflammation focusing glucocorticoids receptor signaling. This will help in easy target reorganization and lead generation. My research includes work on β-amyloid, Neurexin & Neuroligin proteins. β-amyloid involved in Alzheimer’s disease form...
Huntington’s Waltz: Peter Lehndorff.
August 10, 2016 20:00 - 45 minutes - 41 MBGRAPHICS: During the day I am a graphic designer. My wife, Kathy went from being a fine artist doing mixed media sculptural pieces to helping me in my design business. CAREGIVING: For over ten years, I was my late wife Kathy's full-time caregiver. She passed away in October from Huntington's Disease. "HD" is the genetic brain disease that took the life of songwriter Woody Guthrie. Kathy was an artist and sculptor. I am planning a memorial exhibit of her work at the Wilbraham Library in Massa...
The Dr. Goodman Show
August 03, 2016 20:30 - 47 minutes - 42.6 MBDr. Goodman has a open show today where she will answer questions from the community.
"Ask Dr. Goodman Show": Genetic Testing Guidelines
July 07, 2016 20:00 - 45 minutes - 40.7 MBTune in to hear Dr. Goodman talk about the genetic testing criteria associated with Huntington’s disease. There has been a lot of confusion within the community about genetic testing criteria and what it means. If anyone has questions for Dr. Goodman on this topic or would like to share your story, please tune in and join the chat room, or you can email your questions directly to our host, Katie Jackson, at [email protected].
Help 4 JHD Live Peer to Peer
June 23, 2016 20:00 - 45 minutes - 40.8 MBTwo moms, one at the beginning of her journey and one at the end of her journey, talk about raising a child with JHD. This will be a show full of advicefor families living with JHD from the people who know best, the JHD families.
Sam Frank Talks First-HD and ARC Trials Sponsored By Teva
June 15, 2016 20:00 - 24 minutes - 21.8 MBSamuel Frank is a movement disorder neurologist at Beth Israel Deaconess Medical Center (BIDMC), a teaching hospital for Harvard Medical School. After completing his residency and fellowship at the University of Rochester, he joined the neurology faculty at Boston University from 2004 to 2015. Dr. Frank serves as the principal investigator for a Huntington Study Group study and on the HSG executive committee. He is a member of the HDSA Board of Trustee and locally serves as the director of th...
Help 4 JHD Live Peer to Peer
June 02, 2016 20:00 - 1 hour - 72.2 MBDeena 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 c...
Author Therese Crutcher-Marin
May 25, 2016 18:00 - 33 minutes - 29.4 MBTherese 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.
Help 4 JHD Live
May 19, 2016 20:00 - 57 minutes - 52 MBTune 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
Dr. Nancy Wexler on Help4HD Live!
May 18, 2016 20:00 - 1 hour - 67.1 MBWednesday, 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 ...
The Huntington Study Group on Help 4 HD Live
May 11, 2016 20:00 - 31 minutes - 27.8 MBThe 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, M...
Ask Dr. Goodman Show on Psychosis
May 04, 2016 20:00 - 54 minutes - 48.6 MBJoin 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...
Jimmy Pollard
April 27, 2016 20:00 - 46 minutes - 42.1 MBIn 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 t...
Help 4 HD Affordability Shop and Resource Center
April 20, 2016 20:00 - 28 minutes - 25 MBLiten to Katrina Hamel talk about all that is going on at Caring 4 HD Affordabilty Shop and Resource Center.
One Woman's Amazing Story About Her Journey Finding Out About HD
April 13, 2016 20:00 - 49 minutesWe 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 ...
Kids-HD Study Update
March 30, 2016 20:00 - 46 minutesHear 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.
What a difference a dedicated social worker can make in so many lives.
March 23, 2016 20:00 - 58 minutesWe 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 ...
Huntington's Disease Law Enforcement Education Program
March 16, 2016 20:00 - 45 minutes - 40.7 MBTune 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 talks about "Life Interrupted" and her over 30 years of advocacy
March 09, 2016 21:00 - 50 minutes - 45.2 MBSharon 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 wi...
Ask Dr. Goodman
March 02, 2016 21:00 - 39 minutes - 34.8 MBTune 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 foc...
Dr. Mary Edmondson & Ann Lassiter of HD Reach
February 29, 2016 23:30 - 54 minutes - 48.7 MBMonday, 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 877-497-4...
The HD View with Kevin McCormack from CIRM
February 09, 2016 23:30 - 50 minutes - 45.3 MBTonight 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...
The HD View Ask Dr. Goodman
January 12, 2016 23:30 - 55 minutes - 50 MBTuesday, 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...
The HD View Ask Dr. Goodman
December 15, 2015 23:30 - 41 minutes - 37.1 MBTUESDAY, 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 im...
The HD View with Mr. Alan A. Pfeffer, Esq.
October 27, 2015 22:30 - 1 hour - 64 MBTUESDAY, 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...
The HD View Ask Dr. Goodman Show
October 06, 2015 22:30 - 53 minutes - 48.2 MBTUESDAY, 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 impo...
The HD View ~ LEGATO-HD with Dr. Andrew Feigin & Dr. Karen Elta Anderson
September 22, 2015 21:00 - 49 minutes - 44.5 MBTUESDAY, SEPT 22, 2015 ~ 2:00 PM PST/5:00 PM EST Tonight we have two of our most favorite incredible special guests, Dr. Karen Elta Anderson, Director at Georgetown/MedStar HD Clinic and Dr. Andrew Feigin, Director at the HD Center North Shore-LIJ Health System. Both are such esteemed medical professionals and well loved by the families whose lives they touch. They are super stars of Huntington’s disease care and clinical trial investigators. We will be talking about LEGATO-HD, the HSG/Teva ...