Help 4 HD Live!

In this episode, we dive deep into the personal and family impacts of genetic testing for Huntington’s disease. Wes, a genetic counselor, joins the conversation to discuss the emotional, psychological, and interpersonal effects of learning your genetic status. The episode explores how test results can impact not only the individual but also family dynamics, relationships, and decisions about shari...

When you're at risk for Huntington's disease, deciding whether or not to undergo genetic testing is one of the most personal and life-changing decisions you may ever face. But what happens after you get your results? On this episode of Help 4 HD Live , I'm joined by a special guest, "Jules," who is sharing her genetic testing journey while choosing to remain anonymous. For years, Jules wrestled wi...

In this episode of Help 4 HD Live, host Katie Jackson sits down with Wes, a certified genetic counselor and director of HD Genetics, to explore the complexities of genetic testing for Huntington’s disease. Now in its fourth year, HD Genetics provides remote genetic counseling and testing services for the HD community, supporting families as they navigate difficult decisions around predictive genet...

To read/Print the safety planning chapter of the Help 4 HD Toolkit, click here: Help4HD Database

Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here: Help4HD Database

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...

Social Worker Spotlight with Jamie Holloway Traveling Tips & Tricks Host: 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 impr...

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