Help 4 HD Live!

Join 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 t...

Dr. 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...

The 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.

We 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.

In 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...

CIRM's mission is to accelerate stem cells teatments to patients with unmeant medical needs.

Our 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. 

Join 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. 

Join 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 liste...

Our 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 UCon...

Dr. 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 L...

Listen 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 thera...

We 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. 

Sean 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...

As 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.  

Heather 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. 

CEO/Founder of WeHaveAFace, James Valvano, talks about their newest project "The Purple Road"

Join 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...

Join 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. 

Lauren 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 positi...

Caring 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. 

Gary 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 m...

After 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...

Cindy 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 hea...

This 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.