Welcome 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 ...
…
continue reading
HDYO Ambassador: MollyOleh Help4HD
…
continue reading
To read the blog post BJ Viau wrote, please click hereOleh Help4HD
…
continue reading
HDYO Ambassador GemmaOleh Help4HD
…
continue reading
1
HD Uncut: Being Gene-Positive & a Scientist
47:00
47:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
47:00
"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.Oleh Help4HD
…
continue reading
1
End of Life: The Caregiver Perspective
25:00
25:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
25:00
End of Life: The Caregiver PerspectiveOleh Help4HD
…
continue reading
We are Stronger TogetherOleh Help4HD
…
continue reading
Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.Oleh Help4HD
…
continue reading
1
HD Genetics & Clinical Trials with BJ Viau
30:00
30:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
30:00
Please visit hdgenetics.com for more information.Oleh Help4HD
…
continue reading
HD Uncut with GinaOleh Help4HD
…
continue reading
1
HD Awareness Month Wrap-up with Judy Bradley
27:00
27:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
27:00
As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.Oleh Help4HD
…
continue reading
Recap of my visit with UniQure for HD Awareness MonthOleh Help4HD
…
continue reading
1
Act for ALS (and HD) with Thom Hart
45:00
45:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
45:00
Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient grou…
…
continue reading
For more information about the HDYO Ambassadors program, please visit www.hdyo.org.Oleh Help4HD
…
continue reading
1
What I learned at the World Orphan Drug Congress
22:00
22:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
22:00
I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to LiveOleh Help4HD
…
continue reading
1
HD Uncut with Meredith Patterson
1:10:00
1:10:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
1:10:00
Meredith 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. Y…
…
continue reading
1
Using Optical Tweezers in HD with Dr. Piere Rodriguez-Aliaga
31:00
31:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
31:00
Piere 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…
…
continue reading
1
Cognitive Symptoms & Patient-Reported Outcomes with Dr. Jennifer Petrillo Billet
47:00
47:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
47:00
Jennifer 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 evalu…
…
continue reading
1
HDYO Ambassador Series: Rhiannon
35:00
35:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
35:00
Please visit www.hdyo.org for more informationOleh Help4HD
…
continue reading
Please 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.Oleh Help4HD
…
continue reading
Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!Oleh Help4HD
…
continue reading
1
HDYO Ambassadors Series: Ep 1. with Robyn
27:00
27:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
27:00
HDYO Ambassadors Series: Ep 1. with RobynOleh Help4HD
…
continue reading
1
HD Uncut, Ep. 12, with John Howard
26:00
26:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
26:00
Happy 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.Oleh Help4HD
…
continue reading
1
Layers of Love with Dave, Susie and Erika
43:00
43:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
43:00
Happy 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 k…
…
continue reading
To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We ExistOleh Help4HD
…
continue reading
1
DNA Repair in HD with Dr. Joseph Hamilton
28:00
28:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
28:00
Please visit the Hereditary Disease Foundation website to find out more information.Oleh Help4HD
…
continue reading
If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click HereOleh Help4HD
…
continue reading
1
HD Uncut, Ep. 11, with Dina De Sousa
34:00
34:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
34:00
HD Uncut, Ep. 11, with Dina De SousaOleh Help4HD
…
continue reading
1
HD Charge with Dr. Jamie Hamilton
39:00
39:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
39:00
Jamie 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.Oleh Help4HD
…
continue reading
Greater than HD in 2024Oleh Help4HD
…
continue reading
HD Uncut, Ep. 10 with LeahOleh Help4HD
…
continue reading
1
Livable Lives with Christy Dearien
21:00
21:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
21:00
If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearienOleh Help4HD
…
continue reading
1
Welcome to Help 4 HD, Anna Lunsford!
19:00
19:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
19:00
If 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 anna@help4hd.orgOleh Help4HD
…
continue reading
1
Help 4 HD 2023 with Katie and Katrina
26:00
26:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
26:00
For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgOleh Help4HD
…
continue reading
1
Coping During the Holidays with Melissa W.
55:00
55:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
55:00
Coping During the Holidays with Melissa W.Oleh Help4HD
…
continue reading
Lauren shares her feelings about the holidays and her recent birthday.Oleh Help4HD
…
continue reading
Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.Oleh Help4HD
…
continue reading
1
HD Community Advisory Board with Jenna Heilman
40:00
40:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
40:00
If 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 jenna@hdyo.org.Oleh Help4HD
…
continue reading
Rita 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 Develo…
…
continue reading
1
At the Age of Onset with Chris Brown
53:00
53:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
53:00
Chris Brown joins me to talk about the age of onset in HDOleh Help4HD
…
continue reading
1
RARE Fair & YARR with Sarina Smith
15:00
15:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
15:00
Sarina SmithOleh Help4HD
…
continue reading
1
HD Uncut, Ep. 7 with Kayla Paige
17:00
17:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
17:00
If you'd like to join Kayla's Facebook group, please click here.Oleh Help4HD
…
continue reading
1
SURVEYOR - A Personal Experience
37:00
37:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
37:00
Lauren's Experience with SurveyorOleh Help4HD
…
continue reading
1
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
53:00
53:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
53:00
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonellOleh Help4HD
…
continue reading
1
Is It Greener on the Other Side?
1:00:00
1:00:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
1:00:00
Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HDOleh Help4HD
…
continue reading
1
Photobiomodulation Therapy with Kelly
39:00
39:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
39:00
Kelly 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. – kanclark@gmail.com For the PowerPoint Kelly was sho…
…
continue reading
1
HD Uncut, Ep. 6 with Kathryn Jordan
17:00
17:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
17:00
Kathryn 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 - @vintagebabetorontoOleh Help4HD
…
continue reading
1
"When Life Gets Messy" with Erika B. and Jeff M.
1:04:00
1:04:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
1:04:00
Erika 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.youtu…
…
continue reading
1
HD Uncut, Ep. 5 - Erika and Olivia
31:00
31:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
31:00
HD Uncut, Ep. 5 - Erika and OliviaOleh Help4HD
…
continue reading
1
HDF Young Investigators, Ep. 2 - The Gut and HD with Dr. Carolina Gubert
17:00
17:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
17:00
This 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 …
…
continue reading
1
FOCUS-HD with Matt Roche of CHDI
31:00
31:00
Main Kemudian
Main Kemudian
Senarai
Suka
Disukai
31:00
To 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 …
…
continue reading