Help 4 Hd Live!

Tune in to hear Cossetta Stroud talk about her organization Cozie Care and an event they are hosting in Southern California.

Join us as Andrew Feigin, SIGNAL Principal Investigator and Maurice Zauderer, PhD, President of Vaccinex discuss the SIGNAL trial.  

James 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. 

Tune 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.

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 trials. Sharon will also share a little about the bioethics conference she recently attended in Hanover, Germany, as a patient advocate.

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 (Institutional Review Boards) make decisions about whether proposed clinical trials are ethical and whether enough research has been done to minimize the risk to human participants. They also determine whether potential benefits outweigh the risks and help determine the informed consent process for clinical trials. The ultimate goal is to make sure that science is done the "right" way. Mark recently helped plan and co-hosted Herrenhausen Conference: “Lost in the Maze? Navigating Evidence and Ethics in Translational Neuroscience”, February 14 – 16, 2018, Herrenhausen Palace, Hanover, Germany.

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 conversation by calling in or by posting questions and comments in the chat room. We'll also give you the latest information about camps for youth whose lives are impacted by HD and about the upcoming Neuro Film Festival. Links for that information are here: HDYO's North American HD Youth Camp 2017: http://en.hdyo.org/eve/events/524 NYA Youth Retreats 2017: http://nya.hdsa.org/nya-day-retreats Neuro Film Festival: http://patients.aan.com/go/about/neurofilmfestival

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 listen in as the team discusses some of the stresses many HD/JHD families experience and how they will be celebrating this year. 

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 UConn Health Huntington’s Disease (HD) Program in Farmington, Connecticut until June 2017. Dr. Hennig-Trestman has over 30 years of expertise providing clinical service and supervision with patients and family members suffering from neurodegenerative, physical, and psychiatric illnesses. Her book, “Talking to Kids About HD: A book for people who know children with HD in their family” has been translated into five languages. She has provided educational lectures on talking to kids about HD as well as various HD related topics to national and international audiences. Dr. Hennig-Trestman has been involved in HD research co

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 Laboratory. Dr. Nopoulos' laboratory research is designed to evaluate brain development and its relationship to long term behavioral, cognitive, and emotional outcome among children with various medical conditions. While work in the laboratory has historically focused on later childhood, adolescence and young adulthood, some of its current studies are evaluating brain development much sooner – shortly after birth. 

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 therapy for rare genetic diseases such as Huntington’s Disease.  He has previously been a recipient of a National Institute of Health-sponsored Pharmacology Fellowship, Ines McMillan Fellowship in Pharmacology, New Member Scholarship at the Huntington’s Study Group, and selected for Hot Topics in Neuroscience at Society for Neuroscience.  A native of California, Peter is highly interested producing impactful research as well as bridging the gap between science and the public through science communication.”

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 are subjects that can be very difficult to think about and initiate with loved ones. Katie will be talking to Sean about these subject and others that may affect HD/JHD families.

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.