Help 4 HD Live!
516 episodes - English - Latest episode: 11 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.
Homepage Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
Episodes
HD Uncut with Meredith Patterson
April 18, 2024 20:00 - 1 hour - 63.9 MBMeredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159
Using Optical Tweezers in HD with Dr. Piere Rodriguez-Aliaga
April 11, 2024 20:00 - 31 minutes - 28.3 MBPiere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.
Cognitive Symptoms & Patient-Reported Outcomes with Dr. Jennifer Petrillo Billet
April 04, 2024 20:00 - 47 minutes - 42.7 MBJennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington’s Disease, Alzheimer’s Disease, and Cognitive Impairment in Parkinson’s Disease. Jennifer has 20 years of deep e...
HDYO Ambassador Series: Rhiannon
March 28, 2024 20:00 - 35 minutes - 31.5 MBPlease visit www.hdyo.org for more information
HD Gratitude Day
March 21, 2024 20:02 - 8 minutes - 3.47 MBPlease visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.
Samantha Decker
March 14, 2024 20:00 - 27 minutes - 24.6 MBSamantha and I got to participate in a focus group together. Here our thoughts about research and more!!
HDYO Ambassadors Series: Ep 1. with Robyn
February 29, 2024 21:00 - 27 minutes - 24.6 MBHDYO Ambassadors Series: Ep 1. with Robyn
HD Uncut, Ep. 12, with John Howard
February 22, 2024 21:00 - 26 minutes - 23.3 MBHappy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.
Layers of Love with Dave, Susie and Erika
February 15, 2024 21:00 - 43 minutes - 38.9 MBHappy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their kids with HD. To watch more webinars from the "Rare Topics for a Rare Disease" Series, please visit HD Reach's website here.
"We Exist" with Tanita Allen
February 08, 2024 21:00 - 27 minutes - 23.8 MBTo follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We Exist
DNA Repair in HD with Dr. Joseph Hamilton
February 01, 2024 21:00 - 28 minutes - 25 MBPlease visit the Hereditary Disease Foundation website to find out more information.
@thehdhun with Charlotte
January 25, 2024 21:00 - 24 minutes - 21.6 MBIf you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Here
HD Uncut, Ep. 11, with Dina De Sousa
January 18, 2024 21:00 - 34 minutes - 30.7 MBHD Uncut, Ep. 11, with Dina De Sousa
HD Charge with Dr. Jamie Hamilton
January 11, 2024 21:00 - 39 minutes - 35.6 MBJamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.
HD Uncut, Ep. 10 with Leah
December 28, 2023 21:00 - 50 minutes - 45.5 MBHD Uncut, Ep. 10 with Leah
Livable Lives with Christy Dearien
December 21, 2023 21:00 - 21 minutes - 19.1 MBIf you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearien
Welcome to Help 4 HD, Anna Lunsford!
December 14, 2023 21:00 - 19 minutes - 17 MBIf you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at [email protected]
Help 4 HD 2023 with Katie and Katrina
December 07, 2023 21:00 - 26 minutes - 23.4 MBFor more information about all that Help 4 HD is doing, please visit the website - www.help4hd.org
Coping During the Holidays with Melissa W.
November 30, 2023 21:00 - 55 minutes - 49.9 MBCoping During the Holidays with Melissa W.
HD Uncut Series, Ep. 9
November 16, 2023 20:50 - 34 minutes - 15.2 MBLauren shares her feelings about the holidays and her recent birthday.
Vico Therapeutics
November 09, 2023 21:00 - 23 minutes - 20.9 MBDr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.
HDF Young Investigators: MRI Technology in HD Research
November 02, 2023 20:00 - 26 minutes - 23 MBDr. Hett's research uses non-invasive MRI technology to investigate HD-related changes in the circulation of the fluid that bathes the nervous system, known as cerebrospinal fluid (CSF). By measuring the flow of CSF in people, Dr. Hett will attempt to understand better how it changes with HD, and, as a result, potentially determine how drug delivery methods might be tailored more personally. This novel idea emerged from a small pilot study, but could have major implications for the delivery o...
HD Community Advisory Board with Jenna Heilman
October 26, 2023 20:00 - 40 minutes - 36.6 MBIf you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at [email protected].
HD Mythbusters: Generation HD2
October 12, 2023 20:00 - 43 minutes - 39 MBRita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Development OMNI LEAD safety group as Safety Medical Director leading the safety strategy for the initiation and execution of a number of therapeutic are...
At the Age of Onset with Chris Brown
October 05, 2023 20:00 - 53 minutes - 47.6 MBChris Brown joins me to talk about the age of onset in HD
HD Uncut, Ep. 7 with Kayla Paige
September 21, 2023 20:00 - 17 minutes - 15.2 MBIf you'd like to join Kayla's Facebook group, please click here.
SURVEYOR - A Personal Experience
September 15, 2023 20:00 - 37 minutes - 33.3 MBLauren's Experience with Surveyor
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
September 07, 2023 20:00 - 53 minutes - 47.9 MB"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
Is It Greener on the Other Side?
August 31, 2023 20:00 - 1 hour - 54.2 MBDr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HD
Photobiomodulation Therapy with Kelly
August 24, 2023 20:00 - 39 minutes - 35.7 MBKelly Clark is a caregiver for her husband. They are currently using photobiomodulation therapy on her husband to help with his HD. For more information about the research being done, please visit Vielight at vielight.com Please add Kelly as a referral if you purchase from Vielight! Kelly Clark. – [email protected] For the PowerPoint Kelly was showing me, please click here.
HD Uncut, Ep. 6 with Kathryn Jordan
August 10, 2023 20:00 - 17 minutes - 15.1 MBKathryn Jordan is a model, writer and HD advocate who currently lives in Toronto. She has a blog she uses for awareness, you can visit it at this link: www.popularizementalhealth.com You can also follow Kathryn on Instagram - @vintagebabetoronto
"When Life Gets Messy" with Erika B. and Jeff M.
August 03, 2023 15:35 - 1 hour - 57.8 MBErika Boulavsky of HD Reach and I sat down with Jeff Marsocci to talk about when life gets messy - we talked about divorce, disability and so much more! This webinar is a great resource. To watch all of the Rare Topics for a Rare Disease webinars, please visit the HD Reach website here. You can also view this webinar on YouTube at https://www.youtube.com/watch?v=KxIwOU6m7K8.
HD Uncut, Ep. 5 - Erika and Olivia
July 27, 2023 20:00 - 31 minutes - 27.6 MBHD Uncut, Ep. 5 - Erika and Olivia
HDF Young Investigators, Ep. 2 - The Gut and HD with Dr. Carolina Gubert
July 20, 2023 20:00 - 17 minutes - 15.3 MBThis project was inspired by increasing evidence that bugs inhabiting the gut influence brain function and dysfunction, and that the gut microbial community is abnormal in mice and people with Huntington’s disease. It has also been shown that the imbalanced gut bacterial profile observed in individuals carrying the HD gene is associated with lower cognitive performance and poorer clinical outcomes. In HD mice, Dr. Hannan’s lab recently showed that this phenomenon appears even before motor sym...
FOCUS-HD with Matt Roche of CHDI
July 13, 2023 20:00 - 31 minutes - 27.8 MBTo participate in the FOCUS Online study, please visit the following link: https://forms.office.com/r/eXfRT1ZanZ. Matthew Roché, PhD, is the Director of Outcomes Research. Matt earned his PhD in clinical psychology at State University of New York at Binghamton and had pre- and post-doctoral appointments in the Division of Schizophrenia Research at the University of Medicine and Dentistry/Robert Wood Johnson Hospital and Rutgers University. After completing his training, Matt served in Resear...
Behind the Badge with Joe Thurman
July 06, 2023 20:00 - 1 hour - 64.7 MBPlease visit the HD Reach website for more webinars with me and Erika.
HD Uncut, Ep. 4 with Chris Brown
June 22, 2023 20:00 - 1 hour - 56.1 MBHD Uncut, Ep. 4 with Chris Brown
HDF Young Investigators, Ep. 1
June 15, 2023 20:00 - 41 minutes - 37.1 MBCharlene Smith bio: "I am a project scientist in the lab of Dr Leslie Thompson at UC Irvine. I have worked here for 8 years studying Huntington's disease using HD patient derived stem cells. During that time I have received funding from the Hereditary Disease Foundation and the Huntington's Disease Society of America. I graduated in 2015 with my PhD from Cardiff University and wanted to pursue research in Huntington's disease." Gong-Her Wu bio: "In 2015, I proudly earned my Ph.D. from Tsing ...
Project Change with Kevin Jess
June 08, 2023 20:00 - 43 minutes - 38.8 MBKevin's journey with WeHaveAFace began over a decade ago when he joined as a regional advocate. Recognizing the urgent need for advocacy in the HD community, he immersed himself in the organization's mission to raise awareness and support for those affected by the disease. In 2015, his commitment and expertise led him to assume the position of Patient Advocate, where he worked tirelessly to ensure that HD patients received the care and attention they deserved. Driven by his passion for advoc...
Wishing for More with Brandon Pechette
May 25, 2023 20:00 - 23 minutes - 21 MBWishing for More with Brandon Pechette
Fighting for Vince Gilmer with Dr. Benjamin Gilmer
May 18, 2023 20:00 - 29 minutes - 25.7 MBFor more information about Dr. Benjamin Gilmer and his book, please visit his website: https://benjamingilmer.com/ Please send Vince a letter or note if you can. He is feeling very down now and any support with your words would be very helpful to him: Dr. Vince Gilmer # 1190607, MCTC, 110 Wright St, Marion VA. 24354
Advocate Perspective on Prilenia with Seth Rotberg
May 11, 2023 13:00 - 29 minutes - 25.8 MBAdvocate Perspective on Prilenia with Seth Rotberg
Enduring HD with Lori and Ariel
May 05, 2023 14:30 - 26 minutes - 23.3 MBEnduring HD with Lori and Ariel
Institute for Gene Therapies with Erik Paulsen
April 27, 2023 20:00 - 16 minutes - 14.4 MBTo learn more about the Institute for Gene Therapies, please visit their website: www.gene-therapies.org Congressman Erik Paulsen (MN-3) served from 2009 to 2019 as a leading member on the House Ways and Means Committee, which has jurisdiction over healthcare, economic, and trade policy. Erik currently serves as Chairman of the Institute for Gene Therapies, a 501(c)(4) that brings together experts across the healthcare system to advocate for a modernized policy framework that encourages tran...
HD Uncut Ep.3: Symptom Hunting
April 20, 2023 20:00 - 55 minutes - 50.1 MBMelissa Ryant joins me to talk about symptom hunting.
Health and Wellness with Katie Simos
April 13, 2023 20:00 - 29 minutes - 26 MBIf you are interested in learning more about what we are talking about, please send an email to Lauren at [email protected]
HD Heroes with Erin Paterson
April 06, 2023 20:00 - 25 minutes - 22.4 MBYou can purchase the book here. To learn more about Erin Paterson, please visit her website here.
HDYO Congress 2023 Recap with Jenna Heilman
March 30, 2023 20:00 - 20 minutes - 17.7 MBRecap of HDYO Congress 2023 with Jenna Heilman