Help 4 Hd Live!
- Autor: Vários
- Narrador: Vários
- Editor: Podcast
- Duración: 148:17:00
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Sinopsis
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.
Episodios
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HDF Young Investigators, Ep. 1
15/06/2023 Duración: 41minCharlene 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 Hua University, marking a significant milestone in my academic journey. Subsequently, I had the privilege of joining the esteemed lab of Dr. Wah Chiu, where I expanded my expertise further and contributed to cutting-edge research. From 2019 to 2023, I was fortunate to receive support from the Hereditary Disease Foundation (HDF), a valuable recognition of my work's importance and potential impact. Now, I am a research scientist at Stanford University, working in the esteemed lab of Dr. Wah Chiu. Over the past six years, m
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Project Change with Kevin Jess
08/06/2023 Duración: 43minKevin'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 advocacy and the desire to make a difference, Kevin ultimately ascended to the role of President within WeHaveAFace Canada. In this capacity, he continues to lead the organization with unwavering dedication and a clear vision. Drawing inspiration from James Valvano, he embodies Valvano's spirit of relentless pursuit in furthering Project Change and pushing for positive change in the HD community. Please visit www.wehaveaface.org/change for more information.
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Wishing for More with Brandon Pechette
25/05/2023 Duración: 23minWishing for More with Brandon Pechette
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Fighting for Vince Gilmer with Dr. Benjamin Gilmer
18/05/2023 Duración: 29minFor 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
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Advocate Perspective on Prilenia with Seth Rotberg
11/05/2023 Duración: 29minAdvocate Perspective on Prilenia with Seth Rotberg
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Institute for Gene Therapies with Erik Paulsen
27/04/2023 Duración: 16minTo 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 transformative innovations, promotes patient access, and codifies transparent reimbursement practices. As a Member of Congress, Erik was the Chairman of the Joint Economic Committee focusing on innovation, entrepreneurship, digital trade, and other key economic issues. Erik also served as Co-Chair of the House Medical Technology Caucus and is a passionate advocate for innovative life science and medical technologies, the benefits they provide to patients, and the hundreds of thousands of jobs they support. In addition, Eri
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HD Uncut Ep.3: Symptom Hunting
20/04/2023 Duración: 55minMelissa Ryant joins me to talk about symptom hunting.
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Health and Wellness with Katie Simos
13/04/2023 Duración: 29minIf you are interested in learning more about what we are talking about, please send an email to Lauren at lauren@help4hd.org
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HD Heroes with Erin Paterson
06/04/2023 Duración: 25minYou can purchase the book here. To learn more about Erin Paterson, please visit her website here.
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HDYO Congress 2023 Recap with Jenna Heilman
30/03/2023 Duración: 20minRecap of HDYO Congress 2023 with Jenna Heilman
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HD Uncut with Katrina Hamel
23/03/2023 Duración: 01h05minHD Uncut with Katrina Hamel - Gene-negative, caregiver for her mother and brother, and CFO of Help 4 HD International - comes on to talk to us uncut and uncensored about her HD journey.
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Genetic Modifiers of HD
09/03/2023 Duración: 27minDr. Rachel Harding, Dr. Leora Fox, and Dr. Sarah Hernandez join me to discuss genetic modifiers of HD.
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Rare Topics for a Rare Disease
02/03/2023 Duración: 35minFor more information about HD Reach and the upcoming education day and webinars, please visit www.hdreach.org
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HD Uncut, Episode 1 (Chris Brown)
23/02/2023 Duración: 57minChris Brown joins me for our very first episode of the HD Uncut series.
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Caregiver Action Network with Nichole Goble
16/02/2023 Duración: 21minNichole Goble (she/her) is the current Director of Community Initiatives at Caregiver Action Network. She has been with the organization since 2017. As part of her role as Director of Community Initiatives, she manages activities/programs with non-funding community partners and moderates caregiver roundtables and learning collaboratives. She also presents to various community groups on a variety of topics related to caregiving and the resources and supports provided by CAN. Nichole brings a unique perspective to her role, being an individual with a disability that has been on both sides of the caregiving relationship. She also has a background in disability advocacy and experience working with youth and families. Please visit the Caregiver Action Network website at https://www.caregiveraction.org
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Life and Loss with Savannah Wilkes
26/01/2023 Duración: 25minYou can find Savannah on Instagram. Her handle is @lifeandlosswith_sav
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NC Chief of Police Conference
19/01/2023 Duración: 23minErika Boulavsky and I talk about our recent experience at the NCACP Conference