Help 4 HD Live!

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.

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...

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.

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. 

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 .

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. 

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 .

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 of HD Reach and I not only take some time to honor the badass women of the HD community. We also talk a...