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
1
Our Lived Experience (Panel from Help 4 HD Symposium)
32:00
32:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
32:00
Our Lived Experience (Panel from Help 4 HD Symposium)על ידי Help4HD
…
continue reading
1
Are You Prepared for a Disaster?
35:00
35:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
35:00
Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters: Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You …
…
continue reading
1
HD Uncut: Thoughts from Strasbourg
29:00
29:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
29:00
HD Uncut: Thoughts from Strasbourgעל ידי Help4HD
…
continue reading
1
End of Life: The Caregiver Perspective, Part 2
42:00
42:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
42:00
End of Life: The Caregiver Perspective, Part 2על ידי Help4HD
…
continue reading
1
UF Fixel Institute for HD Patients with Dr. Nick McFarland
24:00
24:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
24:00
For more information about the UF Fixel Institute located in Gainesville, FL, please click here.על ידי Help4HD
…
continue reading
HDYO Ambassador: Mollyעל ידי Help4HD
…
continue reading
To read the blog post BJ Viau wrote, please click hereעל ידי Help4HD
…
continue reading
HDYO Ambassador Gemmaעל ידי Help4HD
…
continue reading
1
HD Uncut: Being Gene-Positive & a Scientist
47:00
47:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
47:00
"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.על ידי Help4HD
…
continue reading
1
End of Life: The Caregiver Perspective
25:00
25:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
25:00
End of Life: The Caregiver Perspectiveעל ידי Help4HD
…
continue reading
We are Stronger Togetherעל ידי Help4HD
…
continue reading
Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.על ידי Help4HD
…
continue reading
1
HD Genetics & Clinical Trials with BJ Viau
30:00
30:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
30:00
Please visit hdgenetics.com for more information.על ידי Help4HD
…
continue reading
HD Uncut with Ginaעל ידי Help4HD
…
continue reading
1
HD Awareness Month Wrap-up with Judy Bradley
27:00
27:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.על ידי Help4HD
…
continue reading
Recap of my visit with UniQure for HD Awareness Monthעל ידי Help4HD
…
continue reading
1
Act for ALS (and HD) with Thom Hart
45:00
45:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.על ידי Help4HD
…
continue reading
1
What I learned at the World Orphan Drug Congress
22:00
22:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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 Liveעל ידי Help4HD
…
continue reading
1
HD Uncut with Meredith Patterson
1:10:00
1:10:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
35:00
Please visit www.hdyo.org for more informationעל ידי 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.על ידי Help4HD
…
continue reading
Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!על ידי Help4HD
…
continue reading
1
HDYO Ambassadors Series: Ep 1. with Robyn
27:00
27:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
27:00
HDYO Ambassadors Series: Ep 1. with Robynעל ידי Help4HD
…
continue reading
1
HD Uncut, Ep. 12, with John Howard
26:00
26:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.על ידי Help4HD
…
continue reading
1
Layers of Love with Dave, Susie and Erika
43:00
43:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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 Existעל ידי Help4HD
…
continue reading
1
DNA Repair in HD with Dr. Joseph Hamilton
28:00
28:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
28:00
Please visit the Hereditary Disease Foundation website to find out more information.על ידי 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 Hereעל ידי Help4HD
…
continue reading
1
HD Uncut, Ep. 11, with Dina De Sousa
34:00
34:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
34:00
HD Uncut, Ep. 11, with Dina De Sousaעל ידי Help4HD
…
continue reading
1
HD Charge with Dr. Jamie Hamilton
39:00
39:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.על ידי Help4HD
…
continue reading
Greater than HD in 2024על ידי Help4HD
…
continue reading
HD Uncut, Ep. 10 with Leahעל ידי Help4HD
…
continue reading
1
Livable Lives with Christy Dearien
21:00
21:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
21:00
If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearienעל ידי Help4HD
…
continue reading
1
Welcome to Help 4 HD, Anna Lunsford!
19:00
19:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.orgעל ידי Help4HD
…
continue reading
1
Help 4 HD 2023 with Katie and Katrina
26:00
26:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
26:00
For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgעל ידי Help4HD
…
continue reading
1
Coping During the Holidays with Melissa W.
55:00
55:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
55:00
Coping During the Holidays with Melissa W.על ידי Help4HD
…
continue reading
Lauren shares her feelings about the holidays and her recent birthday.על ידי 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.על ידי Help4HD
…
continue reading
1
HD Community Advisory Board with Jenna Heilman
40:00
40:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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.על ידי 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
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
53:00
Chris Brown joins me to talk about the age of onset in HDעל ידי Help4HD
…
continue reading
1
RARE Fair & YARR with Sarina Smith
15:00
15:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
15:00
Sarina Smithעל ידי Help4HD
…
continue reading
1
HD Uncut, Ep. 7 with Kayla Paige
17:00
17:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
17:00
If you'd like to join Kayla's Facebook group, please click here.על ידי Help4HD
…
continue reading
1
SURVEYOR - A Personal Experience
37:00
37:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
37:00
Lauren's Experience with Surveyorעל ידי Help4HD
…
continue reading
1
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell
53:00
53:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
53:00
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonellעל ידי Help4HD
…
continue reading
1
Is It Greener on the Other Side?
1:00:00
1:00:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
1:00:00
Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HDעל ידי Help4HD
…
continue reading
1
Photobiomodulation Therapy with Kelly
39:00
39:00
נגן מאוחר יותר
נגן מאוחר יותר
רשימות
לייק
אהבתי
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