WeHaveAVoice

WeHaveAVoice

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.

  1. Could Huntington's families be forced into institutions? The truth behind the new DOJ memo!

    6月23日

    Could Huntington's families be forced into institutions? The truth behind the new DOJ memo!

    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.

    22分
  2. Positive Eugenics - Should we worry?

    2月10日

    Positive Eugenics - Should we worry?

    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.

    10分
  3. AMT-130 Update: Breaking through the hype

    2025/11/21

    AMT-130 Update: Breaking through the hype

    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.

    9分
  4. AMT-130 and the 75% Slowdown: What Just Changed for Huntington’s Disease—and What Hasn’t

    2025/09/25

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

    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.

    19分
  5. The Blue Within

    2025/08/23

    The Blue Within

    "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?

    8分
  6. Chair By The Window: A Huntington's Disease Story

    2025/08/22

    Chair By The Window: A Huntington's Disease Story

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

    5分
  7. Huntington's Isn't Rare...It's Ignored

    2025/08/11

    Huntington's Isn't Rare...It's Ignored

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

    18分
  8. The Endless Scroll – Huntington’s Disease in the Age of Doomscrolling

    2025/07/28

    The Endless Scroll – Huntington’s Disease in the Age of Doomscrolling

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

    7分
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番組について

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.

情報

  • クリエイター
    WeHaveAVoice
  • 配信期間
    16年 - 26年
  • エピソード
    129
  • 制限指定
    不適切な内容を含まない
  • Copyright
    © Copyright 2016: WeHaveAFace.org Inc. - WeHaveAVoice
  • 番組のWebサイト
    WeHaveAVoice

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