Help 4 HD Live!

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. 

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 would represent something our community has waited decades for—the possibility of having a disease-modify...

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

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.

Cheryl Turner joins Lauren to talk about movement symptoms in Huntington's Disease and what has been helpful in managing them in her husband.

Please check out Todd's YouTube Channel

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 conditions such as Huntington’s disease, Parkinson’s disease, Alzheimer’s disease and brain injuries. She i...

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

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.

Katie Jackson and Jamie Holloway fill in for Lauren to discuss how chorea (movement) affects people with Huntington's Disease.

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.

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.

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 when she found out about her own genetic risks, she needed a coach to help her learn how to live...

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" petition: https://www.change.org/p/accelerate-breakthrough-drug-approval-for-huntington-s-disease-uniqure-...

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

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 publicl...

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 i...

Lauren and Jamie talk about the upcoming roundtable discussion happening at the Help 4 HD Symposium in September 2025.