Help 4 HD Live!
521 episodes - English - Latest episode: 1 day 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.
Homepage Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
Episodes
WeHaveAFace Annual Convention
March 28, 2018 20:00 - 36 minutes - 32.9 MBJames Valvano, CEO and founder of WeHaveAFace will be joining our host to discuss their upcoming convention in Orlando, Florida. Please tune in to get all of the details.
Help 4 HD Law Enforcement Education Program
March 21, 2018 20:00 - 33 minutes - 29.9 MBTune in to hear Vicki Owen, head of Help 4 HD International's LEEP program, talk about their recent experience exhibiting at Alabama Cheif of Police Winter Conference.
Clinical Trials and Informed Consent: Huntington's Disease
March 14, 2018 20:00 - 51 minutes - 46.2 MBJoin Sharon and Katie to hear a discussion of Help 4 HD International's newest brochure, "Clinical Trials." They will talk about how to get involved in clinical trials, what "informed consent" means, the challenges of clinical trials and how to best prepare for them, personal experiences with clinical trials for Huntington's disease, and how to become a patient advocate for research and clinical trials. Sharon will also share a little about the bioethics conference she recently attended in Ha...
Bioethics and IRBs for Huntington's Disease
March 07, 2018 21:30 - 36 minutes - 32.4 MBDr. Mark Yarborough, Dean's Professor of Bioethics from UC Davis, joins us to talk about the bioethics of clinical trials--the question of whether new practices in biological research are both moral and ethical. This topic has a huge impact on research currently being done on Huntington's disease. He'll also talk about the challenges of doing clinical trials for Juvenile Huntington's disease. IRBs (Institutional Review Boards) make decisions about whether proposed clinical trials are ethical ...
HDYO 2018 Camp
February 28, 2018 21:00 - 32 minutes - 28.8 MBThe Huntington’s Disease Youth Organization is an international non-profit organization set up to specifically provide support for young people around the world impacted by Huntington’s disease.
WAVE Life Sciences
February 21, 2018 21:00 - 23 minutes - 20.7 MBWe are excited to have Wendy Erler, Vice President of Patient Advocacy, share the latest on gene editing on “Help 4 HD Live!” Wave Life Sciences goal: Our goal is to bring meaningful therapies to patients with serious genetic diseases.
A Caregiver's Love
February 14, 2018 21:00 - 52 minutes - 47.2 MBIn honor of Valentine's Day, we are celebrating the very special love that caregivers exhibit every single day as they care for their loved ones who have HD or JHD. Our guests are four amazing women: Barb Sipes, Carla Arriola, Sue Gamble, and Tina Parker Wooldridge. They will share how the disease has changed their relationships and what it has taught them about love. We invite you to join in the conversation by calling in or by posting questions and comments in the chat room. We'll also giv...
California Institute of Regenerative Cures
February 07, 2018 21:00 - 34 minutes - 30.8 MBCIRM's mission is to accelerate stem cells teatments to patients with unmeant medical needs.
JHD Advocacy and Meg's Fight for a Cure JHD Foundation
January 10, 2018 23:00 - 25 minutes - 22.4 MBOur guest this week is Kinser Cancelmo. Kinser lost her husband to HD and her daughter to JHD. Meg was only 15 when she lost her battle with JHD. Kinser started the “Meg’s Fight for a Cure JHD Foundation” in memory of Meg to help raise research funds for a cure and to help other families affected by JHD.
Let's Talk about HD/JHD and Cannabis
December 20, 2017 21:00 - 59 minutes - 53.5 MBJoin us and our guest Ezra Parzybo, Cannabis Consultant and author of "Cannabis Consulting; Helping Patients, Parents, and Practitioners Understand Medical Marijuana" available from UPNE Spring, 2018. Ezra will be joining us to discuss his work in the cannabis community and the benefits that he has seen for those suffering from diseases such as HD and JHD.
Help 4 HD and the Holidays
December 13, 2017 21:00 - 59 minutes - 53.4 MBJoin us as Help 4 HD's executive team and volunteers share how they will navigate through the holiday season. As a follow up from last week's radio show with Dr. Bonnie Hennig-Trestman, the team members will share their current and past experiences as a families affected by HD/JHD. The holidays can be stressful without an illness, but when you add HD or JHD it can increase the stress. Please listen in as the team discusses some of the stresses many HD/JHD families experience and how they will...
Navigating the Holiday Season
December 06, 2017 21:00 - 32 minutes - 28.5 MBOur guest this week is Dr. Bonnie Hennig-Trestman, LCSW, DSW. She is joining us to discuss how HD and JHD families can navigate through the holiday season with less stress and more enjoyment. Dr. Bonnie L. Hennig-Trestman currently has a private tele-therapy practice and serves on the Board of Directors for the Huntington’s Disease Youth Organization (HDYO). She served as the Director of the UConn Health Huntington’s Disease (HD) Program in Farmington, Connecticut until June 2017. Dr. Henni...
Dr. Peg Nopoulos talks about HD and JHD
November 29, 2017 21:00 - 42 minutes - 38.2 MBDr. Peg Nopoulos joins Katie Jackson on Help4HD Live! and discusses her work at the University of Iowa. Dr. Nopoulos is a psychiatrist that works with clients that have HD and JHD. There are several observational studies and clinical trials that are conducted at the University of Iowa. The JHD observational studies are the Kids-HD and Kids JHD programs and those are conducted at the Peg Nopoulos Laboratory. Dr. Nopoulos' laboratory research is designed to evaluate brain development and its re...
Let's Talk about JHD and Gene Editing
November 16, 2017 21:00 - 1 hour - 82.4 MBListen as Katie Jackson and our guest, Peter Deng discuss JHD and gene editing. Peter is a Doctoral Candidate in the Pharmacology and Toxicology program at UC Davis. Currently, he is being mentored by Drs. Jan Nolta, Kyle Fink, and David Segal at the UC Davis Institute for Regenerative Cures and Genome Center. His research is centered on the production and evaluation of a novel DNA-binding therapy for rare genetic diseases such as Huntington’s Disease. He has previously been a recipient of...
Reflections on HIPE Day in Cedar Rapids, Iowa
November 07, 2017 21:00 - 21 minutes - 18.5 MBWe are excited to have Sonia Slevinski, research manager at Dr. Peg Nopoulos’s Lab at the University of Iowa, join us on Help 4 HD Live! She is joining us to discuss Help 4 HD’s HIPE Education Day that was held in Cedar Rapids, Iowa, in August.
Elder law and end-of-life care
November 01, 2017 17:00 - 26 minutes - 23.2 MBSean W. Scott will join our host, Katie Jackson to discuss elder law and end-of-life care. Many HD/JHD families haven’t even thought of end-of-life care and the type of things they should have in place and may not know where to begin. Oftentimes, people at risk for HD are scared to get tested because they are afraid of being denied coverage and benefits based on their results. These conversations are subjects that can be very difficult to think about and initiate with loved ones. Katie will b...
A Spouse's Journey with Huntington's Disease
October 25, 2017 20:00 - 21 minutes - 18.4 MBAs the spouse of a man with Huntington's Disease, Laurie Moore will share her journey with her husband. Through all the emotional ups and downs, the appointments, and everything else that comes with HD, Laurie is going to share their experience on this oftentimes difficult road.
Let's talk to HSG
October 17, 2017 20:00 - 38 minutes - 34.4 MBHeather Hare, Director of Communications and Outreach with the Huntington Study Group is joining us to discuss the mission of HSG and their important contributions to the HD/JHD community, including their Annual Event that will take place in Denver, Colorado on November 2nd-4th, 2017. Please join us to learn about HSG.
"The Purple Road" Part 2
October 11, 2017 20:17 - 29 minutes - 26.5 MBCEO/Founder of WeHaveAFace, James Valvano, talks about their newest project "The Purple Road"
"The Purple Road"
October 11, 2017 20:00 - 16 minutes - 14.1 MBJoin our host, Katie Jackson as she interviews James Valvano, founder and President of WeHaveAFace.org about the filming of their documentary "The Purple Road". The documentary is about families living with Juvenile Huntington's Disease. James has traveled the United States and other countries to capture the footage for the film bringing awareness to a portion of the Huntington's community that is often forgotten. JHD holds a special place in the hearts of those of us at Help 4 HD, Internatio...
Research in India with Roshni Bhatt
October 04, 2017 18:00 - 23 minutes - 20.9 MBJoin us on Help 4 HD Live! as Roshni Bhatt discusses her continued research in India and her background with Huntington's Disease. Roshni has been on the show before and will share the progress that has been made with her research.
Be an Advocate - with Lauren Holder!
September 27, 2017 17:00 - 20 minutes - 17.6 MBLauren Holder is on the show today to talk about herself as an advocate. Lauren is well know in the HD community and has frequented our talk show since the very beginning. Today we will be talking about her recent trip to Washington D.C. and all that was going on while she was there fighting for the HD Parity Act. Lauren is a caregiver and is such an inspiration to so many of us in the same position. It is advocates like Lauren that will make a difference for the next generations to come. T...
JHD Moms Share their Experiences in Caring for their Children
September 20, 2017 20:00 - 1 hour - 55.2 MBCaring for a child with Juvenile Huntington's Disease has a unique set of challenges. From dealing with school officials, IEPs, doctors that aren't familiar with their child's symptoms. Chloe and Misty are going to join our host, Katie Jackson and discuss the daily trials and tribulations of their lives.
Today's Caregiver
September 13, 2017 20:00 - 45 minutes - 40.8 MBGary Barg, founder and CEO to Today's Caregiver, caregiver.com, and Fearless Caregiver, began his journey in 1995, after returning home to help his mother care for his elderly grandparents. Overwhelmed by everything this entailed--finding a care home, dealing with insurance, etc.--he decided there needed to be one single source of information, advice, and support for caregivers. Gary founded the magazine Today's Caregiver and the online site caregiver.com to be that source. He also began host...
Ask Dr. Goodman: My Experience with Austedo
September 06, 2017 20:00 - 41 minutes - 36.7 MBAfter clinical trial results were announced for deutetrabenazine (Austedo), I hoped we might be getting a drug that didn't cause the side effects of other chorea treatments (antipsychotics or the old tetrabenazine). And now that I have prescribed it, it has proved better than I had expected based on the clinical trial results. Though not successful in everyone, it has clearly decreased chorea in most. But what I was not expecting is how much this drug improves the functional activities that ...
Cindy Moore - A mom fighting for her daughter with JHD
August 30, 2017 20:00 - 28 minutes - 24.9 MBCindy Moore is Erin's mom. Cindy has walked every step, alongside her daughter and the struggles that go along with Juvenile Huntington's Disease. Cindy lives in Canada and is also the President of We Have A Face - Canada. This past weekend Cindy and her team raised over $4,000 that will all be donated to UC Davis to help fund their JHD research! Tune-in Wednesday August 30, 2017 at 1PM PST to hear more about Cindy, Erin and We Have A Face!
Help 4 HD Exhibits at Alabama Association of Chiefs of Police Summer Conference
August 23, 2017 20:00 - 32 minutes - 29.2 MBThis year Help 4 HD International exhibited at the Alabama Association of Chiefs of Police Summer Conference. Join us to hear about Vicki Owens experience coming face to face with law enforcement agents from the state of Alabama and teaching them about Huntington's disease.
Phil's Kids
August 16, 2017 20:00 - 31 minutes - 28.3 MBPhil’s Kids was set up in memory of Dr Phil, who sadly passed away from Huntington’s Disease (HD) in 2014. Whenever Dr Phil lost a patient he would immediately go and look at the new-born babies. He did this, he said, because it reminded him of the circle of life, of life continuing, of new hope and who knew what amazing feats these new humans might achieve. It was because of his belief in future generations, the possibilities of medical science and his great love of children that we decided ...
Another Resource for Huntington's and Juvenile Huntington's Disease: GeneFo
August 09, 2017 20:00 - 30 minutes - 27.1 MBNeer Ziskind is the CEO and co-founder, along with geneticist Dr.Yael Wilnai, of GeneFo. GeneFo was created as a solution to patients and medical experts wishing to connect and enrich their understanding of their condition, how to better manage it, and get the most up-to-date information on new treatments and clinical trials. Neer will share with us how GeneFo works and why you should set up a GeneFo account. Registration is FREE, and once you set up an account, you will have access to all th...
HD Blues
August 02, 2017 20:00 - 39 minutes - 34.9 MBBrian Schrag is a Dallas-based composer, performer, sit-down comic, and community arts therapist. He and his family lived in central Africa for about 7 years, helping communities translate the Bible into their languages and use their own arts to make their lives better. Brian has a PhD in ethnomusicology from UCLA, a CAG repeat of 41, one wife, and three mostly grown children (and my first grandchild due in October!). To learn more about Brian Schrag please visit www.hdblues.org and www.m...
Lanise Shortell, RN and Certified Grief Recovery Specialist, Talks About Grief
July 26, 2017 20:00 - 54 minutes - 48.8 MBLanise Shortell, RN, is a Pediatric Clinical Care Nurse Specialist who received her degree from Georgia State University. She has worked with The Children’s Program of Hospice Atlanta, Visiting Nurse Hospice Atlanta, since 2007. Ms. Shortell was nominated for the Atlanta Journal Constitution Celebrating Nurses Award in 2008, 2009, and 2014. According to colleague Jan Roesner, “Lanise's passion in life is caring for terminally ill children and their families." She is part of a very small grou...
Miss Greater Kalamazoo 2017 - Shelby Lentz tells her story about HD w/positivity
July 19, 2017 20:00 - 34 minutes - 30.3 MBShelby Lentz, Miss Greater Kalamazoo, is on our show to talk about how she became aware of Huntington's disease running in her family. Shelby is a Huntington's Disease advocate and due to her own experience with this disease she is able to shed light on common questions, thoughts and decisions that she has faced. We will be discussing her family history, her own testing process and her ability to bring much needed awareness to HD all while being a singer/song writer, working, competing and co...
Another Resource for Huntington's & Juvenile Huntington's Disease: GeneFo
July 12, 2017 14:30 - 30 minutes - 26.7 MBNeer Ziskind is the CEO and co-founder, along with geneticist Dr.Yael Wilnai, of GeneFo. GeneFo was created as a solution to patients and medical experts wishing to connect and enrich their understanding of their condition, how to better manage it, and get the most up-to-date information on new treatments and clinical trials. Neer will share with us how GeneFo works and why you should set up a GeneFo account. Registration is FREE, and once you set up an account, you will have access to all th...
Azevan Pharmaceuticals
July 05, 2017 20:00 - 22 minutes - 19.5 MBAzevan Pharmaceuticals is a clinical stage, small molecule drug development company developing novel therapeutics to treat disorders of stress, mood, and behavior. The Company’s first clinical compounds selectively block the effects of arginine vasopressin, a peptide neurohormone involved in the pathophysiology of Intermittent Explosive Disorder, neuropsychiatric symptoms in neurodegenerative diseases, PTSD, and other affective disorders. Vasopressin 1a receptor antagonists represent a novel ...
Watching Their Dance: Three Sister, a Genetic Disease and Marrying into a Family
June 14, 2017 20:00 - 24 minutes - 21.1 MBTherese Marin will be joining us on Help 4 HD Live to give us a update on her book "Watching Their Dance."
A Caregiver's Fight - Mary Robertson
May 31, 2017 20:00 - 18 minutes - 15.9 MBMary Robertson Knows exactly what it's like to care for someone with Huntington's disease. Mary is a caregiver extraordinaire and offers support, resources and a listening ear to hundreds. Mary sits on the Board of Directors at WeHaveAFace as the Director of Patient Advocacy. Mary often reaches out to people who have no association to HD and teaches them about this disease. Mary also has come into situations that were unplanned where she was able to speak with someone who has Huntington's Dis...
I Fight for Understanding
May 06, 2017 20:00 - 36 minutes - 32.5 MBGinnievive Patch is the pseudonym used by the author of Help 4 HD's new book, I Fight for Understanding. Ginnievive is both a nurse and a caregiver extraordinaire who has many insightful tips for caregivers. She is a caregiver to her ex-husband, her mother-in-law, and two of her sons, all of whom have Huntington's disease. Her passion is to educate caregivers and help them survive the turmoil HD/JHD can cause in the early stages, primarily if the psychiatric symptoms outweigh the physical sy...
Chronically Smiling
May 05, 2017 19:00 - 21 minutes - 18.7 MB"ChronicallySmiling.com is a part of Chronic Connect Inc. Chronic Connect Incorporated seeks to serve the chronic illness community by providing resources and community for patients. We will be developing technology that allows patients to find local support, sending care packages to both patients and caregivers in need and creating programs for patient and caregiver support and education. We launched in April of 2017 and are currently applying for our 501(c)(3) license." Ilana Jacqueline |...
I Fight for JHD
May 04, 2017 16:00 - 51 minutes - 46.5 MBStacey and her husband, Terry Sargent, are incredible JHD warrior parents who live outside of Atlanta, Georgia. Terry adopted Stacey's son, Cory, and served, in every sense, as Cory's father, loving him as his own child. When Cory started school, he had some learning difficulties and a slight speech impairment. When Cory turned 8 yrs old, Stacey and Terry noticed a facial droop and drastic decline in speech. After an MRI, they were told by a neurologist that Cory had Encephalopathy….a big w...
A Mother's Fight
May 03, 2017 20:00 - 35 minutes - 31.6 MBTune in to hear an interview with Deborah Bunting, who is the caregiver for her adult son, Jimmy, who lives with Huntington’s disease. Deborah and Jimmy made a bucket list for Jimmy, and Deborah is fighting to make sure all her son's dreams come true. Recently, Jimmy, with the help of local law enforcement, firefighters, and community members, made it to the top of a lighthouse. Jimmy loves lighthouses, and he's always dreamed of climbing to the top of one. It was a touching moment for Jimmy ...
Kisa Heyer - Dream Foundation - Who qualifies and how?
April 27, 2017 20:00 - 20 minutes - 17.9 MBTune in to Help4HD LIVE! On Thursday, April 27th, 2017 to hear from Kisa Heyer, Chief Executive Officer of Dream Foundation. Kisa Heyer directs the operations of Dream Foundation, the only national dream-granting organization for terminally-ill adults, including programming, development and staff functions, and management of the Board of Directors. Since her appointment as Executive Director in 2013 and later as Chief Executive Officer in 2016, Heyer has focused on expanding the availabi...
HIPE (Highly Interactive Participant Education) Day in Washington State
April 19, 2017 20:00 - 45 minutes - 41.2 MBTerry Tempkin is an ARNP who worked with Huntington's families for 19 years at the UC Davis HD Canter, helping patients and families through their HD/JHD journey. Terry has retired from UC Davis, but she hasn't retired from HD! She works tirelessly as a volunteer to help educate people about the disease. She is a medical advisor for Help 4 HD International and also sits on the Executive Board of Directors. Today, Terry will share some of the most common issues she's encountered in her work wi...
FDA Approves Austedo!!
April 10, 2017 15:00 - 34 minutes - 30.3 MBSamuel Frank, MD,is an associate professor of Neurology at Beth Israel Deaconess Medical Center and 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 is an active member of the Huntington Study Group, having served as a principal investigator and as a member of HSG’s executive committee. He has also served as a member of HDSA’s Board of Trustees and is the dire...
What's New With The Huntington Study Group (HSG)?
March 29, 2017 20:00 - 39 minutes - 34.9 MBListen in to hear more about The Huntington Study Group and what is coming in the near future. Heather Hare, Director of Communications & Outreach at HSG, will be on the show today, along with Ann Nelson, a loving wife and caregiver for her husband, David. HSG was founded in 1993 as an organization within the University of Rochester and became a stand-alone 501(c)(3) non-profit in 2012. The Huntington Study Group facilitates high-quality clinical research trials and studies in Huntington’...
An Interview with Jason Evans
March 22, 2017 20:00 - 34 minutes - 30.6 MBJason Evans is an incredible man, and we are excited to have him on Help 4 HD Live! Jason Evans is a farmer, philosopher, and an avid outdoors man. He was born in Oregon but has lived in places like Malaysia, England, and Norway. Jason’s family is impacted by Huntington’s disease. Jason has taken his love for the outdoors and made it into a way he can raise funds and awareness for Huntington’s disease. Jason does an annual hike to raise funds for HDSA. When we say hike, we are talking about...
The Possible Power of Laughter
March 10, 2017 18:00 - 31 minutes - 28 MBDr. Brown received his MD at Harvard, followed by internship and PM&R residency at the University of Washington, a Master of Public Health at UC Berkeley, and most recently, a fellowship in Multiple Sclerosis (MS) at U. Washington. He is a board-certified member of the American Board of Physical Medicine and Rehabilitation. He has been working in the field of MS since 2003. Dr. Brown is the Director of Neurorehabilitation at the EvergreenHealth MS Center, EvergreenHealth Neuroscience Ins...
Caring Voice Coalition Cares for HD/JHD Community
March 08, 2017 21:00 - 39 minutes - 35.1 MBDo you need help with applying for disability? Help with paying for prescriptions? Our very special guest today is Heather Fortune, Case Manager II for Caring Voice Coalition, a 501(c)(3) organization that empowers patients who live with a life-threatening chronic disease. They offer comprehensive outreach programs and services aimed at financial, emotional, and educational support. Huntington's disease is one of several diseases that CVC supports. The resources they provide include financial...
HD Trial Finder
February 22, 2017 21:00 - 27 minutes - 24.4 MBJoin us to learn more about HD Trial Finder, a very important program at HDSA. Without clinical trials, we will never have an FDA-approved drug or therapy for Huntington's disease. HD Trial Finder is an important program because it alerts community members when they would possibly be eligible to participate in a clinical trial.
A Caregiver's Love--A Very Special Love
February 15, 2017 21:00 - 1 hour - 73 MBIn honor of Valentine's Day, we are celebrating the very special love that caregivers exhibit every single day as they care for their loved ones who have HD or JHD. Our guests are four amazing women: Barb Sipes, Carla Arriola, Sue Gamble, and Tina Parker Wooldridge. They will share how the disease has changed their relationships and what it has taught them about love. We invite you to join in the conversation by calling in or by posting questions and comments in the chat room. We'll also giv...
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...