Help 4 HD Live!

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 tremendous stigma and isolation. That diagnosis would profoundly shape both of their lives—but in very different and equally important ways. Dr. Nancy Wexler is a pioneering geneticist and one of the most influential figures in the history of Huntington’s disease research. She played a central role in the international research effort in Venezuela that ultimately helped scientists locate the Huntington’s disease gene on chromosome 4, paving the way for the identification of the gene itself in 1993. She has spent decades advancing HD research, advocating for families, and helping transform our understanding of the disease. Dr. Alice Wexler is a historian, author, and scholar whose work has explored the human side of that same scientific story—the history of Huntington’s disease, the experiences of families living with genetic risk, and the complicated questions surrounding predictive testing, identity, stigma, and inheritance. She is the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research and The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease. Together, Nancy and Alice offer something truly unique: two perspectives on the same family history—one that helped change the course of Huntington’s disease science and, at the same time, tells a deeply human story about what it means to live in the shadow of an inherited disease. You can purchase Nancy's book here: https://hdfoundation.org/nancy-wexler-memoir/

Social Worker Spotlight with Jamie HollowayTraveling Tips & TricksHost: Katrina Hamel#HuntingtonsDisease #HD #SocialWorkerSpotlight #Help4HD #Help4HDLive #Travel

Please visit hdreach.org to sign up for the first Crafting Corner meeting on August 19th at 7 pm

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 people across the U.S. HD community. Every response helps us better understand what's working, where improvements are needed, and how we can use real patient experiences to advocate for better care.If you've been seen at any HD clinic in the United States or you are a support person who takes a loved one to an HD clinic, your voice matters.🎧Please visit hdpace.org for more information! You can also access the survey here.

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-modifying treatment for Huntington's disease. On today's Help 4 HD Live, Jeremy Renz and I are taking a realistic look at what could happen next. We'll discuss what approval could mean, what hurdles would still remain, and what patients and families might expect moving forward.💙 #HuntingtonsDisease #AMT130 #GeneTherapy #Help4HDLive #TimeMatters #DelayStealsTime

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 is also an associate professor of psychiatry and neurology at Georgetown University Medical Center. 

To Submit an awareness video: Registration Form | Help 4 HD InternatioTo 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 with difficult genetic information. She never found that person so she trained to become that person for other people.

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-amt-130The "organization-led" petition: https://www.change.org/p/bring-hope-to-huntington-s-disease-families-urge-the-fda-to-uphold-accelerated-approval?recruiter=1395431917&recruited_by_id=5eb38b60-c0f9-11f0-833a-3786d08ac93b&utm_source=share_petition&utm_campaign=starter_onboarding_share_social&utm_medium=copylink

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 disease, Parkinson’s disease, tardive dyskinesia and Huntington’s disease.

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 and register here: https://www.hdreach.org/conference/2025.html

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 [email protected]

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 DayWhat? 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 families every chance they get. Together on Gratitude Day, we all appreciate our partnership together.Why? There are several reasons to mark Gratitude Day:· In many ways our partnership is unique in all of Science.· The partnership is the foundation of all we have achieved to date.· From CAG counts, to genetic testing and gene-free babies, to clinical trials, our partnership has already changed the experience of living with HD.· The promising conclusion to the great quest for a “cure” will come from our partnership.· Our partnership will be strengthened by collectively setting aside a day to appreciate and recognize it.· As an initiative launched by Factor-H, we acknowledge the contributions of those original Venezuelan families who remain living in extreme poverty and our work to serve them.When? March 23rd. In the greater community of families and scientists, the “gene find” is the most recognized date of the year.In 1993, on the next day, the New York Times front page reported:“After 10 backbreaking years in a research purgatoryof false leads, failed experiments and long stretches ofmordant despair, an international team of scientists saysit has discovered the most coveted treasure in molecularbiology, the gene behind Huntington’s disease.”It’s fitting that we continue marking this anniversary date to celebrate the essential element of our past achievements, as well as those which are to come.What? H-Hands The “H-Hands” sign is our symbol. It’s made by joining your hands together in the common “heart hands” sign, then extending your index or “pointer” fingers, creating an “H.” It represents both the elements of Factor-H and our community at large. It’s used to show your participation in Gratitude Day.Join us! You can participate yourself, as a family or friend, or with your office colleagues, lab staff, bench mates or any other team making the H-Hands sign:· Post a personal message, video, or photo on any social media platform as early as Monday March 17th.· It’s about recognizing our unique partnership!· We encourage you to use the logo and “H-Hands.”· Last year, people posed in their offices, labs, next to their MRI machines, and outside corporate offices, hospitals, or buildings with their entire team making H-Hands. Families and friends posted their closeups, in kitchens, and on couches.· Poems, songs, signs, stories…we encourage you!· Spread the word among your colleagues!·Use #HDGratitudeDay to share it. Factor-H This small band of volunteers loosely organizing Gratitude Day ask you to support Factor-H, our charity serving the descendants of those original family partners still living in extreme poverty in Venezuela. You can learn more about them, our work and donate at www.Factor-H.org.More info? Thanks to hundreds of scientists and families who participated last year. It’s viral so it’s difficult to thank you all individually.Questions, more information and help? Please contact any one of us who are organizing it: Asuncion Martinez [email protected], Cristina Ferreira [email protected] Jimmy Pollard [email protected]