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WeHaveAVoice

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Rating
★★★★★
5
from
4 reviews
This podcast has
129 episodes
Language
English
Publisher
WeHaveAVoice
Explicit
No
Date created
2016/03/22
Latest episode
2026/06/23
Average duration
13 min.
Release period
66 days

Description

WeHaveAFace.org Inc. has created "WeHaveAVoice" Radio for the Huntington's and Juvenile Huntington's disease community. It is time for the community to speak out...speak up! We must openly share what all of us in the Huntington's community experience on a daily basis! Removing the stigmas and broadening social awareness and acceptance is paramount! Visit: www.WeHaveAFace.org/Radio for more information.

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Could Huntington's families be forced into institutions? The truth behind the new DOJ memo!
2026/06/23
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?
2026/02/10
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
2025/11/21
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 the divide: real science vs. false hope. We dig into the hype machine, the backlash, and why Huntington’s families are being pushed into a letter-writing campaign to fix a mess they never deserved. If you’re tired of miracles being promised and ripped away, this is the show you’ve been waiting for.
AMT-130 and the 75% Slowdown: What Just Changed for Huntington’s Disease—and What Hasn’t
2025/09/25
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
2025/08/23
"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
2025/08/22
A Huntington's Disease Story about Ellen, abandoned by everyone she loved.
Huntington's Isn't Rare...It's Ignored
2025/08/11
A short monologue about how Huntington's disease is being ignored.
The Endless Scroll – Huntington’s Disease in the Age of Doomscrolling
2025/07/28
The modern phenomena of Doomscrolling and its affect on Huntington's Disease. A short monologue.
Nicotine Patches & Huntington’s Disease: Is There Hope?
2025/07/26
A short monologue concerning the possible use of nicotine patches for Huntington's Disease.
The House That Doesn't Sleep
2025/07/23
A short monologue about caregiver burnout.
The Kids Who Carry Too Much
2025/06/25
Child caregivers are no longer uncommon and the numbers are rising.
44% of Men Die Prematurely
2025/06/17
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
2025/02/02
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
2024/02/13
Host, Kevin Jess, talks about Rare Disease Day which is just around the corner
New Guidelines to Revolutionize Care for Huntington's Disease Patients
2023/12/21
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD

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5 out of 5
4 reviews
★★★★★
ImDone2026 2019/09/17
Huntington’s disease awareness
We will never stop talking about HD until the world knows that we are here!
★★★★★
Emily Nana 2019/09/17
Great show!
I’m so happy that this show exists. We need to educate the world about Huntington’s disease!
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