Claim OwnershipHelp 4 HD Live!
Subscribed: 1Played: 15
Subscribe
© Copyright Help 4 HD Live!
Description
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, Lauren Holder, 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 your own physician for advice about any medical recommendation.
672 Episodes
Reverse
Please reach out to Lauren or Katie if you want contact information for the FDA.
Happy Halloween! Melissa and Lauren talk about JHD and how we can adapt for our loved ones for holidays like Halloween.
If you would like to purchase Jen's book, you can do so here.
Author Erin Paterson joined Lauren Holder to talk about their mixed feelings regarding UniQure's recent update.
Dr. Ed Wild joins Lauren Holder to talk about the recent update from UniQure.
If you'd like to learn more about C-Path, please visit their website here.
We want to hear about your experience at HD clinics, including what worked, what didn’t, and what could be improved. We have created a short, anonymous 15-minute survey for patients and caregivers to share feedback. |Your feedback can help improve HD care—for you, your family, and the thousands of others navigating this disease. 📊 Once we have enough responses, results will be shared publicly at www.hdpace.org. Your voice matters! Please take the survey and share it with others in the HD community. #HuntingtonsDisease #HDCommunity #PatientVoice #HDPACE 🔗 Take the survey here.
Jenna Heilman from HDYO joins me to talk about the HDCONNECT event that will be happening alongside the Help 4 HD Symposium in FT. Lauderdale, FL, in September. We also discuss more collaborative efforts within the HD community, like joining Critical Path Institute's HD-RSC group.
H. Patton, Erika and Melissa Boulavsky and I attended the HDYO Congress event in Prague together earlier this year. It was H's first HD event, and he decided to record his reactions while there. When we got back, all of us decided to sit down and do our own reaction video to H's reaction videos. It was a lot of fun to do! If you'd like to watch the full video, you can go here. You can also find it on HD Reach's website and YouTube channel.
Lauren and Jamie talk about the upcoming roundtable discussion happening at the Help 4 HD Symposium in September 2025.
I share how moments with people in the HD community have had an impact on me and refilled my "cup" when I've needed it most.
Dr. Lori Quinn and Dr. Jamie Adams share about a new observational study for the HD community, one that you can do from the comfort of your own home! It's called MEND-HD, and you can find out more information here.
Here's the link for a list I made with Amazon Prime Day deals that you may find helpful: https://tinyurl.com/primedayinhd
Today, we’re honoring the life and legacy of Liv, a beloved HDYO Ambassador. Esme & Gemma join me to talk about mental health, advocacy, and the importance of continuing Liv’s mission. TW: Discussion of mental health challenges.
In this episode, Dwight Tapp, MS, PhD, MBA, CCRP, CRCP, FACHE, sits down with Lauren Holder to discuss the INGREZZA® expansion into the treatment of chorea associated with Huntington’s disease for adults and the development of INGREZZA SPRINKLE. Dwight is Associate Medical Director, Neurology, at Neurocrine Biosciences. Prior to joining the Medical Affairs team at Neurocrine Biosciences, Dwight worked in pharmaceutical, medical imaging and clinical trial management companies. He has advanced degrees in psychology, neuroscience and healthcare business administration, and completed fellowships and post-doctoral training in brain aging, dementia and neuroimaging. Dwight has conducted research in Alzheimer’s disease, Parkinson’s disease, tardive dyskinesia and Huntington’s disease.
To buy Sarah's new book, "This is Me Smiling", please click here.To find out more about Sarah and to follow her blog, please click here.
Gracey shares how HD has become a part of her life since she met her boyfriend, Jake, and how she supports him, making them a united front against HD.
Lori Jones is the author of Spared: A Memoir of Risk and Resolve. In it, she delves into her personal journey growing up in a family affected by Huntington’s Disease (HD), exploring themes of inherited trauma, caregiving, and ethical dilemmas.You can visit her website here.You can buy her book on Amazon here.
If you would like to join POWERHD, please click here.
Jimmy Pollard closes HDYO's 2025 International Young Adult Congress with a speech on Empowerment Through Gratitude.You can watch the full video here.
Comments
Download from Google Play
Download from App Store
United States