WeHaveAVoice

Could Huntington's families be forced into institutions? The truth behind the new DOJ memo! 23.06.2026 21:55 ↓

What does the new Justice Dept. memo really mean for people living with Huntington's Disease and their families?  We separate fact from fear in this episode.

Positive Eugenics - Should we worry? 10.02.2026 9:48 ↓

That's not a rhetorical question. I'm not asking to provoke. I'm asking because something is shifting in our culture, and people with genetic disease  are the first to fell it.

AMT-130 Update: Breaking through the hype 21.11.2025 9:29 ↓

AMT-130 was sold as the breakthrough Huntington’s families have waited generations for — a one-shot gene therapy that “changes everything.” Researchers celebrated, headlines exploded, and desperate families finally believed they might be saved. But behind the hype, the FDA slammed the brakes, a leading scientist called out exaggerated claims, and truth collided with marketing. This episode exposes...

AMT-130 and the 75% Slowdown: What Just Changed for Huntington’s Disease—and What Hasn’t 25.09.2025 18:45 ↓

We Have A Voice Radio dives into the AMT-130 news for Huntington’s—what this one-time, brain-delivered gene therapy is, what the reported “75% slowdown” really means, what’s next for approval, and the hard truths on access and cost.

The Blue Within 23.08.2025 8:05 ↓

"The Blue Within" dives into the surprising potential of methylene blue—a simple dye with extraordinary promise—in the fight against Huntington’s disease and other neurodegenerative disorders. Blending science, human stories, and community voices, this episode asks: could one drop of blue hold the key to clarity, hope, and change? 

Chair By The Window: A Huntington's Disease Story 22.08.2025 5:29 ↓

A Huntington's Disease Story about Ellen, abandoned by everyone she loved.

Huntington's Isn't Rare...It's Ignored 11.08.2025 17:32 ↓

A short monologue about how Huntington's disease is being ignored.

The Endless Scroll – Huntington’s Disease in the Age of Doomscrolling 28.07.2025 7:17 ↓

The modern phenomena of Doomscrolling and its affect on Huntington's Disease. A short monologue.

Nicotine Patches & Huntington’s Disease: Is There Hope? 26.07.2025 7:44 ↓

A short monologue concerning the possible use of nicotine patches for Huntington's Disease.

The House That Doesn't Sleep 23.07.2025 6:51 ↓

A short monologue about caregiver burnout.

The Kids Who Carry Too Much 25.06.2025 9:46 ↓

Child caregivers are no longer uncommon and the numbers are rising.

44% of Men Die Prematurely 17.06.2025 8:04 ↓

44% of men die prematurely in Canada. Most likely higher in the US. But what about men with Huntington's Disease?

HD Research: What's in store for 2025 and beyond according to AI 02.02.2025 31:59 ↓

Kevin uses AI to analyze all information to get a picture of what may happen in regards to HD research in light of possible policy changes due to a new U.S. administration. This is not a political post.

Rare Disease Day 13.02.2024 12:32 ↓

Host, Kevin Jess, talks about Rare Disease Day which is just around the corner

New Guidelines to Revolutionize Care for Huntington's Disease Patients 21.12.2023 13:05 ↓

Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD

Bunny Clark and the 10th Annual Huntington's Heroes Walk 23.05.2023 13:38 ↓

Bunny Clark talks about The Walk for Huntington's Disease May 28th

WeHaveAFace! What's next? 16.03.2023 20:10 ↓

Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.

Worthlessness 29.09.2022 21:11 ↓

Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.

Coffee Talk with Kevin and Jen (Chat #7) 01.07.2022 38:35 ↓

Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community

Coffee Talk with Kevin and Jen (Chat #6) 27.06.2022 1:00:22 ↓

Jen and Kevin talk about hope, testing and other topics

Coffee Talk with Jen and Kevin (Chat #5) 16.06.2022 44:05 ↓

Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25

Kevin speaks about memories and nurturing relationships 14.06.2022 28:16 ↓

Kevin talks about memories of his wife Sheila and how it's important to nurture friendships

Coffee Talk with Jen and Kevin (Chat 4) 11.06.2022 44:42 ↓

Jen gets an unexpected call and discussion ensues.

Coffee Talk with Jen and Kevin (Chat #3) 02.06.2022 47:56 ↓

Jen and Kevin chat about disappointments over the years in the Huntington's Disease community