พอดคาสท์ Help4HD ชั้นนำ (2024)

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.โดย Help4HD

1
My Visit with UniQure 12:00

Play Pause

3M ago12:00

12:00

Recap of my visit with UniQure for HD Awareness Monthโดย Help4HD

1
Act for ALS (and HD) with Thom Hart 45:00

4M ago45:00

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…

1
HDYO Ambassadors: Ashley 31:00

4M ago31:00

31:00

For more information about the HDYO Ambassadors program, please visit www.hdyo.org.โดย Help4HD

1
What I learned at the World Orphan Drug Congress 22:00

4M ago22:00

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 Liveโดย Help4HD

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HD Uncut with Meredith Patterson 1:10:00

4M ago1:10:00

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…

1
Using Optical Tweezers in HD with Dr. Piere Rodriguez-Aliaga 31:00

5M ago31:00

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…

1
Cognitive Symptoms & Patient-Reported Outcomes with Dr. Jennifer Petrillo Billet 47:00

5M ago47:00

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…

1
HDYO Ambassador Series: Rhiannon 35:00

5M ago35:00

35:00

Please visit www.hdyo.org for more informationโดย Help4HD

1
HD Gratitude Day 8:00

5M ago8:00

8:00

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.โดย Help4HD

1
Samantha Decker 27:00

6M ago27:00

27:00

Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!โดย Help4HD

1
HDYO Ambassadors Series: Ep 1. with Robyn 27:00

6M ago27:00

27:00

HDYO Ambassadors Series: Ep 1. with Robynโดย Help4HD

1
HD Uncut, Ep. 12, with John Howard 26:00

6M ago26:00

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.โดย Help4HD

1
Layers of Love with Dave, Susie and Erika 43:00

6M ago43:00

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…

1
"We Exist" with Tanita Allen 27:00

7M ago27:00

27:00

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 Existโดย Help4HD

1
DNA Repair in HD with Dr. Joseph Hamilton 28:00

7M ago28:00

28:00

Please visit the Hereditary Disease Foundation website to find out more information.โดย Help4HD

1
@thehdhun with Charlotte 24:00

7M ago24:00

24:00

If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Hereโดย Help4HD

1
HD Uncut, Ep. 11, with Dina De Sousa 34:00

7M ago34:00

34:00

HD Uncut, Ep. 11, with Dina De Sousaโดย Help4HD

1
HD Charge with Dr. Jamie Hamilton 39:00

8M ago39:00

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.โดย Help4HD

1
Greater than HD in 2024 27:00

8M ago27:00

27:00

Greater than HD in 2024โดย Help4HD

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HD Uncut, Ep. 10 with Leah 50:00

8M ago50:00

50:00

HD Uncut, Ep. 10 with Leahโดย Help4HD

1
Livable Lives with Christy Dearien 21:00

8M ago21:00

21:00

If you'd like to follow Christy on social media, you can find her here: Facebook - www.facebook.com/ChristyDearien Instagram - @christydearienโดย Help4HD

1
Welcome to Help 4 HD, Anna Lunsford! 19:00

9M ago19:00

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.orgโดย Help4HD

1
Help 4 HD 2023 with Katie and Katrina 26:00

9M ago26:00

26:00

For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.orgโดย Help4HD

1
Coping During the Holidays with Melissa W. 55:00

9M ago55:00

55:00

Coping During the Holidays with Melissa W.โดย Help4HD

1
HD Uncut Series, Ep. 9 34:00

10M ago34:00

34:00

Lauren shares her feelings about the holidays and her recent birthday.โดย Help4HD

1
Vico Therapeutics 23:00

10M ago23:00

23:00

Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.โดย Help4HD

1
HD Community Advisory Board with Jenna Heilman 40:00

10M ago40:00

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.โดย Help4HD

1
HD Mythbusters: Generation HD2 43:00

11M ago43:00

43:00

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…

1
At the Age of Onset with Chris Brown 53:00

11M ago53:00

53:00

Chris Brown joins me to talk about the age of onset in HDโดย Help4HD

1
RARE Fair & YARR with Sarina Smith 15:00

11M ago15:00

15:00

Sarina Smithโดย Help4HD

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HD Uncut, Ep. 7 with Kayla Paige 17:00

11M ago17:00

17:00

If you'd like to join Kayla's Facebook group, please click here.โดย Help4HD

1
SURVEYOR - A Personal Experience 37:00

12M ago37:00

37:00

Lauren's Experience with Surveyorโดย Help4HD

1
"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell 53:00

12M ago53:00

53:00

"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonellโดย Help4HD

1
Is It Greener on the Other Side? 1:00:00

12M ago1:00:00

1:00:00

Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HDโดย Help4HD

1
Photobiomodulation Therapy with Kelly 39:00

1y ago39:00

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…

1
HD Uncut, Ep. 6 with Kathryn Jordan 17:00

1y ago17:00

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 - @vintagebabetorontoโดย Help4HD

1
"When Life Gets Messy" with Erika B. and Jeff M. 1:04:00

1y ago1:04:00

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…

1
HD Uncut, Ep. 5 - Erika and Olivia 31:00

1y ago31:00

31:00

HD Uncut, Ep. 5 - Erika and Oliviaโดย Help4HD

1
HDF Young Investigators, Ep. 2 - The Gut and HD with Dr. Carolina Gubert 17:00

1y ago17:00

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 …

1
FOCUS-HD with Matt Roche of CHDI 31:00

1y ago31:00

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 …

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