Help 4 Hd Live!

Informações:

Sinopse

Welcome to Help4HD Live! We are proud to broadcast credible information and education to the Huntington's disease community on a weekly basis. Help4HD 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 a generous communications 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.

Episódios

  • Challenges in Placing Our Loved Ones with HD

    13/06/2018 Duração: 31min

    Tune in to hear Katrina Hamel talk about placing our loved ones with HD. We hear over and over about the challenges our families face when it comes to placing their loved ones with HD. Katrina has worked in hospice care for over 15 years. Her experience has brought a lot of insight to Help 4 HD. This show will shed a lot of light on the behind-the-scenes things that go on within care homes.

  • HD Advocate Gia Mannone

    06/06/2018 Duração: 25min

    We are excited to have Gia Mannone on the show with us to talk about her advocacy projects she is working on to spread awareness about HD. Gia has done some very creative and successful awareness campaigns on social media to spread awareness and tell her story. We look forward to this interview and to hearing more about what Gia is doing to spread awareness about HD.

  • Help 4 HD Overview on May Programs

    23/05/2018 Duração: 26min

    Tune in to hear Katie Jackson and Katrina Hamel discuss all that Help 4 HD International did for Huntington's Awareness Month

  • The Huntington Study Group

    16/05/2018 Duração: 43min

    About HSG The Huntington Study Group (HSG), which was formed in 1993, is the world’s first HD cooperative therapeutic research organization. Today, HSG is a world leader in facilitating high quality clinical research trials and studies that bring us closer to finding more effective treatments for HD and reducing the burden of HD for families affected by the disease. HSG is an organization of compassionate professionals dedicated to finding treatments that make a difference, providing rigorous care initiatives, and improving the quality of life and outcomes for HD families. How? By bringing together families, medical professionals, clinical researchers, HD advocacy groups, and sponsors to raise awareness of HD, share knowledge and best practices, and develop innovative treatments.

  • Stand Up and Show Up; An interview with HD advocate Lauren Steffan

    09/05/2018 Duração: 33min

    Lauren Steffan will be on with us to talk about all that she is doing to advocate for our HD community when it comes to research and care. 

  • Seth Rotberg

    02/05/2018 Duração: 41min

    Seth found out as a 15-year-old that his mom had a rare, neurological, genetic disease known as Huntington’s Disease (HD). HD is like having symptoms of ALS, Alzheimer’s, and Parkinson’s all at once, and there currently is no cure. Five years later, Seth tested positive for HD and used the results as motivation to give back to the community through fundraising, advocacy, and volunteer efforts. His hope is to be a mentor for young people who face adversity by sharing how taking control of his HD journey has given him opportunity, fulfillment, and hope. 

  • HD GEM Project

    25/04/2018 Duração: 22min

    Join us as founder and creator, Casey Herrington discusses the Huntington's Disease Global Ecosystem Map (HD GEM) Project. HD GEM Project's mission is to further engage with the "silent" 70% of the HD community by helping those impacted by Huntington's disease (HD) find the resources they need to better assist them on their HD journey. This not for profit project was started and created by Casey Herrington with the guidance of the an advisory team made up of leaders within the HD community.

  • Survivors Guilt

    18/04/2018 Duração: 36min

    Join our host, as Ginnievive Patch discusses her recent article in The Huntington's Post about Survivor's Guilt. It is very common for family members that are HD negative to feel guilty about their results. 

  • Cozie Care

    11/04/2018 Duração: 25min

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

  • Huntington's Study Group and SIGNAL

    04/04/2018 Duração: 22min

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

  • WeHaveAFace Annual Convention

    28/03/2018 Duração: 36min

    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. 

  • Help 4 HD Law Enforcement Education Program

    21/03/2018 Duração: 33min

    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.

  • Clinical Trials and Informed Consent: Huntington's Disease

    14/03/2018 Duração: 51min

    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.

  • Bioethics and IRBs for Huntington's Disease

    07/03/2018 Duração: 36min

    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.

  • HDYO 2018 Camp

    28/02/2018 Duração: 32min

    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.

  • WAVE Life Sciences

    21/02/2018 Duração: 23min

    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.

  • A Caregiver's Love

    14/02/2018 Duração: 52min

    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

  • California Institute of Regenerative Cures

    07/02/2018 Duração: 34min

    CIRM'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

    10/01/2018 Duração: 25min

    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. 

  • Let's Talk about HD/JHD and Cannabis

    20/12/2017 Duração: 59min

    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. 

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