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Help 4 HD Live!

Help 4 HD Live!

Welcome to Help 4 HD Live! We are proud to broadcast credible information and education to the Huntington"s disease community on a weekly basis. Help 4 HD Live! broadcasts every week providing vital information and inspiration to our Huntington"s community. We have been blessed to interview many of our JHD/HD researchers, medical professionals, care providers and the pharmaceutical industry for six years. Join our Hosts, Lauren Holder, each week for incredible programming and don’t forget to share

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All Episodes

52:29

Life After Testing with Jules

Help 4 HD Live! ·

2026/10/09

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 with the decision of whether or not to test. When would she be ready? Did she really want to know? And how

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15:57

Genetic Testing: Time to Test and Process

Help 4 HD Live! ·

2026/10/01

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 genetic testing. The conversation covers the personal journey of deciding when—or if—to get tested, the

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10:15

Katrina and Jamie - Help 4 HD Toolkit Part 2

Help 4 HD Live! ·

2026/09/24

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

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15:31

Katrina & Jamie talk about the Help 4 HD - HD Tool...

Help 4 HD Live! ·

2026/09/17

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

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20:06

"My Life, My Science" Part 1 with Dr. Nancy and Dr....

Help 4 HD Live! ·

2026/08/29

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

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16:15

Symposium 2026 ~ Des Moines, Iowa with Katie & Katrina

Help 4 HD Live! ·

2026/08/20

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15:34

Traveling Tips & Tricks

Help 4 HD Live! ·

2026/08/13

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

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22:23

HD Reach Crafting Corner

Help 4 HD Live! ·

2026/08/06

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

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17:10

Patient Clinic Survey Update with HD-PACE

Help 4 HD Live! ·

2026/07/23

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

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16:45

Response to Roche Update with HDBuzz

Help 4 HD Live! ·

2026/07/09

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.

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50:08

On the Other Side of Approval with Jeremy Renz

Help 4 HD Live! ·

2026/06/25

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

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25:03

All About Advocacy, Everywhere - USA

Help 4 HD Live! ·

2026/06/11

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

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62:08

All About Advocacy, Everywhere!

Help 4 HD Live! ·

2026/06/04

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.

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19:44

Movement Symptoms in Huntington's with Cheryl Turner

Help 4 HD Live! ·

2026/05/28

Cheryl Turner joins Lauren to talk about movement symptoms in Huntington's Disease and what has been helpful in managing them in her husband.

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49:32

Cognitive Symptoms in HD with Todd Knaack

Help 4 HD Live! ·

2026/05/21

Please check out Todd's YouTube Channel

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23:48

Mood Symptoms in HD with Dr. Karen Anderson

Help 4 HD Live! ·

2026/05/14

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.

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8:24

HD Awareness Month Help 4 HD Style with Katrina and...

Help 4 HD Live! ·

2026/04/30

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

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59:14

"I Am The Swamp" with Rachel Reising

Help 4 HD Live! ·

2026/04/17

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.

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30:31

Steps of Courage: Facing Chorea Head-On

Help 4 HD Live! ·

2026/04/10

Katie Jackson and Jamie Holloway fill in for Lauren to discuss how chorea (movement) affects people with Huntington's Disease.

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48:18

HD Uncut with Sarina Smith

Help 4 HD Live! ·

2026/03/12

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.

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