Help 4 HD Live!

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 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 dise...

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 about our recent experience at the HDYO Congress in Prague, and we talk about HD Reach's upcoming event in NC. You can learn more...

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 impoverished families living with HD in Venezuela. They contributed their DNA to scientists of the U.S.-Venezuela Collaborative Research Project, led by Nancy Wexler, beginning in 1979.Families thank scientists all the time. Scientists thank familie...

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 Organization - Being a Partner to a Young Person Impacted by HD 
Huntington's Disease Youth Organization - Potential Outcomes of Not Discussing HD Global Genes has a blog post dedicated to this topic – it's called Love is in t...

Help 4 HD Updates for 2025 with Katie Jackson

Emma Wajswasser is a 12-year-old student from Toronto whose grandpa is living with HD. She
wrote this book because she wanted to educate kids and adults about the disease and how to
interact with people in a kind and compassionate way. This is not just a book about Huntington’s disease; it is about having empathy and understanding for any older adults in our lives.

The book is published by Lemonade Press, a social purpose publisher that works with
underrepresented medical communities to create specialized books about medical conditions and rare diseases.

When Bloo...

Pay What You Can: www.paywhatyoucanpeersupport.com/faqs  Alliance of Hope: www.allianceofhope.org or phone number is 847-868-3313 National Suicide Hotline:   If you live in the US, contact the National Suicide Prevention Lifeline by calling 988 or texting “Hello” to 741741. Their website is www.988lifeline.org   They also have a chat option and services for deaf/HoH  For other countries, visit this website: www.allianceofhope.org/feeling-suicidal  HDSA Telehealth: www.hdsa.org/find-help/community-social-support/hdsa-telehealth/  You can also contact them by emailing HDSAinfo@HDSA.org or calling their Helpline at 800-345-4372

Erika (HD Reach) and Lauren (Help4HD Podcast) talk with Clinical Social Worker and Hospice Supervisor Shivani Borah about Hospice and the end-of-life process. We discuss medications, advanced directives, and the myths and misunderstandings surrounding Hospice care. Join us as we dive into a very difficult topic openly and honestly. The link to the webinar can be found here: https://www.youtube.com/watch?v=e1CxsZP5f8o

HD Uncut: Days of Our Lives

The Help 4 HD Resource Database has a resource called mRelief, which is a nonprofit that helps you determine eligibility and sign up for SNAP and other supplemental programs by using a quick survey via text message. You can text the word “Food” to 74544 to complete the screening survey over text or visit their website at www.mrelief.com.   www.hungerfreeamerica.org Full Cart, which is a national food assistance program available to individuals and families who are facing financial hardships and food insecurity. www.fullcart.org.   Dysphagia Outreach Project and they have a Dysphagia Food Bank program: www.dysphagiaoutreach.org/apply-for...

Update about Sage Therapeutics with Lauren Holder

If you'd like to check out the video, here's the link: https://youtu.be/NTiqiAeBMOw

Please visit the Rare Patient Voice website for more information, or reach out to Lauren Holder at lauren@help4hd.org WES MICHAEL Founder and President, Rare Patient Voice Wes Michael founded Rare Patient Voice in 2013 to give patients and family caregivers the opportunity to voice their opinions through taking part in research studies. Rare Patient Voice has now recruited for thousands of studies and rewarded patients and family caregivers with over $13 million for their participation. Many have been recruited in person by Wes and his team at patient events and through a robust referral program with patient advocacy and...

Lauren Holder recently did a webinar with HDYO's Jenna Heilman, Prof. Hugh Rickards, and HDYO Ambassador Molly about breaking down barriers when it comes to access to a potential treatment. You can watch the full video here: https://www.youtube.com/watch?v=y6CrrVGfBTk Breaking Down Barriers is sponsored by Roche, Sage Therapeutics, Teva Pharmaceutical, uniQure, Wave Life Sciences, The Griffin Foundation, Neurocrine Biosciences and PTC Therapeutics.

Our Lived Experience (Panel from Help 4 HD Symposium)

Helpful information on being prepared for a disaster: https://www.ready.gov/disability Information about FEMA: https://www.disasterassistance.gov/ Here are some tips for people with disabilities to prepare for disasters:  Make a plan Create a network of people who can help you in an emergency, and keep their contact information in a safe place. You can also consider giving a trusted person a key to your home.  Prepare for evacuation Make sure your home's exits are wheelchair accessible, and practice emergency evacuation drills with your family and personal care attendant. Also, plan for accessible transportation in case you need t...

HD Uncut: Thoughts from Strasbourg

End of Life: The Caregiver Perspective, Part 2

For more information about the UF Fixel Institute located in Gainesville, FL, please click here.

HDYO Ambassador: Molly

To read the blog post BJ Viau wrote, please click here

HDYO Ambassador Gemma

"Bri" joins me to discuss what it's like being gene-positive for HD and a scientist doing HD research.

End of Life: The Caregiver Perspective

We are Stronger Together

Please contact Jenna Heilman if you're interested in learning more about the HDYO Ambassadors program.

Please visit hdgenetics.com for more information.

HD Uncut with Gina

As a way to wrap up HD Awareness Month, let's #LightItUp4HD on social media tomorrow! Share a video or photo of you with blue and/or purple glow sticks tomorrow. Make sure to use #LightItUp4HDandJHD and/or #2024LightItUp4HD. If you want, also share why you're lighting it up for HD/JHD.

Recap of my visit with UniQure for HD Awareness Month

Thom Hart is the Director of Outreach with the Critical Path Institute (C-Path), which is a nonprofit created by the FDA to "improve the drug development process. It operates as a neutral third party to enable scientists from the regulated industry and international regulatory agencies to work together with scientists from academia and patient groups to improve the drug development process. (Wikipedia)"  You can visit their website here: https://c-path.org/ If you are interested in contacting Thom directly, please reach out to Lauren Holder at lauren@help4hd.org, and she will connect you.

For more information about the HDYO Ambassadors program, please visit www.hdyo.org.

I recently attended the World Orphan Drug Congress in Boston, MA. The audio for this episode is from my YouTube video that you can find here: Dying to Live

Meredith Patterson is a performing artist, author, and producer whose family was impacted by Huntington's Disease. To learn more about her, please visit her website: https://meredithpatterson.com/ She also has a podcast called "Confessions of an Actress". This week on her podcast, she shared about Huntington's Disease as a way to raise awareness. You can check out the episode here: https://podcasts.apple.com/us/podcast/confessions-of-an-actress/id1456371818?i=1000652286159

Piere Rodriguez-Aliaga, PhD, is a young investigator whose current HD research is funded by the Hereditary Disease Foundation. He is using a new Nobel Prize-winning technology called Optical Tweezers to study one huntingtin molecule at a time, which allows access to structural information about pathogenic and non-pathogenic huntingtin variants with unprecedented detail. Please visit the Hereditary Disease Foundation website for more information.

Jennifer Petrillo Billet PhD is an Executive Director and Program Lead for investigational dalzanemdor, or SAGE-718, at Sage Therapeutics. She is responsible for driving the global development strategy, including delivery of the right evidence for key stakeholders including regulators, payers, and providers, and patients. Dalzanemdor is being evaluated for indications in Huntington’s Disease, Alzheimer’s Disease, and Cognitive Impairment in Parkinson’s Disease. Jennifer has 20 years of deep expertise in the measurement science of Clinical Outcomes Assessments (COAs) and significant experience in all phases of drug development. Jennifer received her Bachelors in Economics at Virginia Tech, and her PhD from the Lond...

Please visit www.hdyo.org for more information

Please visit the Factor-H website for more information. Please also tune in to the Factor-H YouTube Channel on Saturday 3/23/2024 at 12 pm EST for HD Gratitude Day events in Venezuela.

Samantha and I got to participate in a focus group together. Here our thoughts about research and more!!

HDYO Ambassadors Series: Ep 1. with Robyn

Happy 1st anniversary of the #HDUncut Series on #Help4HDLive! This show is exactly why I came up with the series in the first place. John Howard has Huntington's Disease. He's also a very talented poet. On this show, he shares some new poetry with the HD Community.

Happy Valentine's Day! Join Erika Boulavsky from HD Reach and Lauren Holder from Help 4 HD in their conversations with Dave and Susie Hodgson about their Layers of Love. Dave and Susie's unique story talks about caring for both of their spouses with HD, how they found each other, and how they continue to support one another while caring for their kids with HD. To watch more webinars from the "Rare Topics for a Rare Disease" Series, please visit HD Reach's website here.

To follow Tanita Allen, please visit her website: https://tanitaallen.com/ Here is the link to purchase a copy of Tanita Allen's book: We Exist

Please visit the Hereditary Disease Foundation website to find out more information.

If you'd like to follow Charlotte on social media, please visit her website: https://linktr.ee/thehdhun Instagram handle - @thehdhun TikTok - Click Here

HD Uncut, Ep. 11, with Dina De Sousa

Jamie L. Hamilton, PhD, is the Director of Clinical Outcome Assessments at CHDI. She led the HD Charge study, which focused on the indirect costs associated with being affected by Huntington's Disease.

Greater than HD in 2024

HD Uncut, Ep. 10 with Leah

If you'd like to follow Christy on social media, you can find her here:  Facebook - www.facebook.com/ChristyDearien Instagram - @christydearien

If you would like to send your resources and tips and tricks to Anna for our new database, please go to the Help 4 HD website - www.help4hd.org - go to Contact Us and submit. Anna is regularly checking submissions through the website. You can also send it directly to her email at anna@help4hd.org

For more information about all that Help 4 HD is doing, please visit the website - www.help4hd.org

Coping During the Holidays with Melissa W.

Lauren shares her feelings about the holidays and her recent birthday.

Dr. Katja Obieglo joins Lauren to talk about the research Vico Therapeutics is doing. To learn more, please visit their website here.

If you'd like to learn more about HD-CAB, including how to become a member, please visit the website here. You can also contact Jenna Heilman at jenna@hdyo.org.

Rita Gandhy is a movement disorders neurologist and comes with over 4 years of experience at Roche/Genentech. Prior to her current work in USMA, Rita led the Study Review Team for a planned tominersen study in late onset Huntington's Disease, being responsible for developing the protocol and study set up. Before USMA, Rita was in the Product Development OMNI LEAD safety group as Safety Medical Director leading the safety strategy for the initiation and execution of a number of therapeutic areas including the anti-tau molecule semorinemab. Rita obtained her undergraduate degree in theology and biology from University of Rochester, and...

Chris Brown joins me to talk about the age of onset in HD

Sarina Smith

If you'd like to join Kayla's Facebook group, please click here.

Lauren's Experience with Surveyor

"Sex, Drugs, Rock 'n Roll...and HD" with Erika B. and Dr. Katherine McDonell

Dr. Jack Lam and Erika B. join me to discuss CBD, cannabis and HD

Kelly Clark is a caregiver for her husband. They are currently using photobiomodulation therapy on her husband to help with his HD. For more information about the research being done, please visit Vielight at vielight.com Please add Kelly as a referral if you purchase from Vielight! Kelly Clark. – kanclark@gmail.com For the PowerPoint Kelly was showing me, please click here.

Kathryn Jordan is a model, writer and HD advocate who currently lives in Toronto. She has a blog she uses for awareness, you can visit it at this link: www.popularizementalhealth.com You can also follow Kathryn on Instagram - @vintagebabetoronto

Erika Boulavsky of HD Reach and I sat down with Jeff Marsocci to talk about when life gets messy - we talked about divorce, disability and so much more! This webinar is a great resource. To watch all of the Rare Topics for a Rare Disease webinars, please visit the HD Reach website here. You can also view this webinar on YouTube at https://www.youtube.com/watch?v=KxIwOU6m7K8.

HD Uncut, Ep. 5 - Erika and Olivia

This project was inspired by increasing evidence that bugs inhabiting the gut influence brain function and dysfunction, and that the gut microbial community is abnormal in mice and people with Huntington’s disease. It has also been shown that the imbalanced gut bacterial profile observed in individuals carrying the HD gene is associated with lower cognitive performance and poorer clinical outcomes. In HD mice, Dr. Hannan’s lab recently showed that this phenomenon appears even before motor symptoms. However, they do not yet fully understand the mechanisms mediating this imbalance nor do they know whether an intervention that returns the comm...