Help 4 HD Live!

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...

You can find the Fundación Familia Huntington Costa Rica on Facebook and Instagram

I'm attending and speaking at the HDYO Congress Event in Prague! Take a listen!

If you would like to learn more about how to get involved, please email me at lauren@help4hd.org

Rare Disease Day is Feb 28, 2025.  Please visit NORD's website for information and resources for their #ShowYourStripes campaign. They have a social media toolkit, as well as playbooks with step-by-step guides on how to raise awareness for Rare Disease Day. Another great organization with resources is Global Genes . You can participate in their #ZebraTales and #CareAboutRare campaigns.   

Jimmy Pollard joined me to talk about HD Gratitude Day on 3/23/2025.  Recognizing Huntington’s Gratitude Day What? A social media event recognizing the unique partnership between families and scientists working together towards an effective treatment, or “cure,” for HD on March 23rd, the anniversary of the discovery of the gene. It spotlights the contributions to that milestone achievement of impo...

This panel discussion occurred at the 2025 Southeast HD Symposium in Nashville, TN. The panelists included Maryann Emerick of HDSA, Jamie Holloway of Help 4 HD, Jenna Heilman of HDYO, and Erika Boulavsky of HD Reach. Author and advocate Christy Dearien facilitated the discussion. You can also watch this on Lauren's YouTube channel - Dying To Live .

This is an HD Uncut series episode with my husband, Josh Holder. I interview him for the 1st time in our 20-year marriage.

Hannah joins me to share her story about being a young caregiver and becoming an HDYO Ambassador.

Amy Ogilvie joins Lauren to discuss her HD journey and how it has led her to do research in HD.

Jamie Holloway joined me to talk about intimacy and share relationship resources. Webinar with Dr. Karen Anderson and Erika Boulavsky of HD Reach: Sex and Intimacy within the Huntington's Disease Journey Huntington's Disease Youth Organization - Relationships   Relationships - NYA  Huntington's Disease Youth Organization - Talking About HD with Family and Friends   Huntington's Disease Youth Organ...