PODCAST · health
Help 4 HD Live!
by Help 4 HD Live!
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.
Episodes
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Testing: Impact and Supports
In this episode, we dive deep into the personal and family impacts of genetic testing for Huntington’s disease. Wes, a genetic counselor, joins the conversation to discuss the emotional, psychological, and interpersonal effects of learning your genetic status. The episode explores how test…
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Life After Testing with Jules
When you're at risk for Huntington's disease, deciding whether or not to undergo genetic testing is one of the most personal and life-changing decisions you may ever face. But what happens after you get your results? On this episode of Help 4 HD Live, I'm joined by a special guest, "Jules," who…
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Genetic Testing: Time to Test and Process
In this episode of Help 4 HD Live, host Katie Jackson sits down with Wes, a certified genetic counselor and director of HD Genetics, to explore the complexities of genetic testing for Huntington’s disease. Now in its fourth year, HD Genetics provides remote genetic counseling and testing services...
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Katrina and Jamie - Help 4 HD Toolkit Part 2
To read/Print the safety planning chapter of the Help 4 HD Toolkit, click here: Help4HD Database
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Katrina & Jamie talk about the Help 4 HD - HD Tool Kit - PT 1
Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here: Help4HD Database
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"My Life, My Science" Part 1 with Dr. Nancy and Dr. Alice Wexler
Nancy and Alice are sisters, authors, scholars, and longtime members of the Huntington’s disease community. Their mother, Leonore Wexler, was diagnosed with Huntington’s disease in the late 1960s, at a time when very little was understood about the disease and families affected by HD often faced...
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Traveling Tips & Tricks
Social Worker Spotlight with Jamie Holloway Traveling Tips & Tricks Host: Katrina Hamel #HuntingtonsDisease #HD #SocialWorkerSpotlight #Help4HD #Help4HDLive #Travel
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HD Reach Crafting Corner
Please visit hdreach.org to sign up for the first Crafting Corner meeting on August 19th at 7 pm
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Patient Clinic Survey Update with HD-PACE
How are Huntington's disease clinics doing when it comes to the patient experience? On this episode of Help 4 HD Live, I'm joined by Sarina Smith of HD-PACE to share an update on our Clinical Patient Experience Survey—and we need your help! We're incredibly close to reaching 100 responses from...
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Response to Roche Update with HDBuzz
Today, Roche announced they will be ending two of their programs for #HuntingtonsDisease. Dr. Rachel Harding of HDBuzz will be joining Lauren to talk about this and what it means for the HD community.
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On the Other Side of Approval with Jeremy Renz
For years, we've talked about clinical trials, FDA meetings, setbacks, and progress. Today, we're talking about something many of us have dreamed about for a long time: What happens if AMT-130 gets approved? Approval wouldn't answer every question, and it wouldn't solve every challenge. But it...
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All About Advocacy, Everywhere - USA
In this episode, hear Christina DeGryse and Karl Miran speak at the Public Hearing of Commissioner’s National Priority Voucher (CNPV) Pilot Program. Right now, you can leave a comment about this program until June 29th. Here is the link
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All About Advocacy, Everywhere!
For the next few weeks, we are going to talk about advocacy efforts going on everywhere. This week, we have HDYou Community Stories from HDYO. Dina and Sarina share what advocacy efforts are happening globally.
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Movement Symptoms in Huntington's with Cheryl Turner
Cheryl Turner joins Lauren to talk about movement symptoms in Huntington's Disease and what has been helpful in managing them in her husband.
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Cognitive Symptoms in HD with Todd Knaack
Please check out Todd's YouTube Channel
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Mood Symptoms in HD with Dr. Karen Anderson
Karen Anderson, MD, is a psychiatrist specializing in neuropsychiatry, and director of the Huntington’s Disease Care, Education and Research Center at MedStar Georgetown University Hospital. Dr. Anderson sees adult patients and families dealing with behavioral symptoms caused by neurological...
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HD Awareness Month Help 4 HD Style with Katrina and Katie
To Submit an awareness video: Registration Form | Help 4 HD Internatio To request a Help 4 HD HD Awareness Swag box: Registration Form | Help 4 HD Internatio
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"I Am The Swamp" with Rachel Reising
After being publicly dismissed as “the swamp,” by a government official, Rachel Reising is turning that moment into something bigger -using her voice to advocate, to challenge, and to live out loud for herself and the entire community.
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Steps of Courage: Facing Chorea Head-On
Katie Jackson and Jamie Holloway fill in for Lauren to discuss how chorea (movement) affects people with Huntington's Disease.
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HD Uncut with Sarina Smith
Sarina Smith joined Lauren to talk about her recent trip to Washington D.C. for Rare Disease Week and what she learned from other rare disease groups.
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Love in HD with Heather & Nathan Wilmoth
Every year around Valentine's Day, we do a "Love in HD" show. This year, Heather and Nathan Wilmoth joined me to share their love story and how that love fuels not only their day-to-day life, but also their advocacy efforts.
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Genetic Frontiers with Susanna Smith
For more information about Susanna's podcast and health/wellness coaching, please visit her website here. Susanna Smith, MPH, is a health & wellness coach, who trained through Duke University Health & Well-Being Program. Susanna specializes in coaching people who live at risk because years ago…
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HD Uncut with Jeremy R.
Jeremy Renz joined Lauren to talk about the petition to the FDA that he and other advocates created and why it's important we support it. Our Call to Action: Both petitions will be closing on Sunday, 1/18/2026. Please take the time to sign and share them before then! The "non-organizational"...
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Help 4 HD Happenings in 2026
Katrina Hamel joins Lauren to talk about what Help 4 HD has planned for 2026. Take a listen! You can also register to attend the events mentioned at the website: www.help4hd.org
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November Update with Katie Jackson
Please reach out to Lauren or Katie if you want contact information for the FDA.
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JHD Uncut, Halloween Edition
Happy Halloween! Melissa and Lauren talk about JHD and how we can adapt for our loved ones for holidays like Halloween.
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A Glimmer of Light in the Shadows with Jennifer Goddard
If you would like to purchase Jen's book, you can do so here.
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HD Uncut wiith Erin Paterson
Author Erin Paterson joined Lauren Holder to talk about their mixed feelings regarding UniQure's recent update.
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UniQure Update with Dr. Ed Wild
Dr. Ed Wild joins Lauren Holder to talk about the recent update from UniQure.
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Sunday Sit-down with Terina Martinez
If you'd like to learn more about C-Path, please visit their website here.
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Important Update with HD-PACE
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…
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HDCONNECT with Jenna Heilman
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.
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Attending Events with H, Erika and Melissa
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.…
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PPEM Roundtable with Jamie Holloway
Lauren and Jamie talk about the upcoming roundtable discussion happening at the Help 4 HD Symposium in September 2025.
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The Power of a Moment
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.
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MEND-HD with Dr. Lori Quinn and Dr. Jamie Adams
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.
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Prime Day in HD
Here's the link for a list I made with Amazon Prime Day deals that you may find helpful: https://tinyurl.com/primedayinhd
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Liv's Legacy with Esme & Gemma
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.
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Ingrezza with Dwight Tapp of Neurocrine
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...
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This is Me Smiling with Sarah & Randy Foster
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.
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Being United with Gracey
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.
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Spared with Lori Jones
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…
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POWERHD with Karmen T.
If you would like to join POWERHD, please click here.
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HDYO Congress 2025 - Keynote: Empowerment Through Gratitude
Jimmy Pollard closes HDYO's 2025 International Young Adult Congress with a speech on Empowerment Through Gratitude. You can watch the full video here.
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HD Uncut with Lance K.
Lance joins me for our HD Uncut series to share his story and how being proactive about his mental health has made such a difference.
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Rare Disease Warriors at WODC USA 2025
The "Power Panel" at the World Orphan Drug Congress USA in Boston, MA, spoke about addressing common barriers in rare hereditary, progressive adult-onset diseases. You can watch the video here.
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HD Uncut with Corrie Harris
Corrie Harris shares her family's HD journey with us, and it is both raw and beautiful. She shows how, for her family, there are no coincidences and love never fails.
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Resources Review: Apps Edition
These are the top 3 apps that I personally use. You can access the Goblin Tools browser version here. You can find more information on Visible here. You can find more information about Bearable here.
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Badass Women of HD with Erika B.
March is Women's History Month, and our HD community has so many women who are truly badasses - from leadership in our Patient Advocacy Organizations to the JHD moms and caregivers to the people with HD who fight every single day. I wanted to take a moment to acknowledge that. :) Erika Boulavsky…
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ABOUT THIS SHOW
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.
HOSTED BY
Help 4 HD Live!
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Frequently Asked Questions
How many episodes does Help 4 HD Live! have?
Help 4 HD Live! currently has 697 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is Help 4 HD Live! about?
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...
How often does Help 4 HD Live! release new episodes?
Help 4 HD Live! releases new episodes frequently with a large back catalog of 697 episodes. Check the episode list for recent publication dates.
Where can I listen to Help 4 HD Live!?
You can listen to Help 4 HD Live! on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts Help 4 HD Live!?
Help 4 HD Live! is created and hosted by Help 4 HD Live!.
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