Claim OwnershipWeHaveAVoice
Subscribed: 17Played: 208
Subscribe
© Copyright 2016: WeHaveAFace.org Inc. - WeHaveAVoice
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.
Visit: www.WeHaveAFace.org/Radio for more information.
127 Episodes
Reverse
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.
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" 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?
A Huntington's Disease Story about Ellen, abandoned by everyone she loved.
A short monologue about how Huntington's disease is being ignored.
The modern phenomena of Doomscrolling and its affect on Huntington's Disease. A short monologue.
A short monologue concerning the possible use of nicotine patches for Huntington's Disease.
A short monologue about caregiver burnout.
Child caregivers are no longer uncommon and the numbers are rising.
44% of men die prematurely in Canada. Most likely higher in the US. But what about men with Huntington's Disease?
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.
Host, Kevin Jess, talks about Rare Disease Day which is just around the corner
Kevin Jess talks about recent papers published and about to be published concerning changing the diagnostic criteria for HD
Bunny Clark talks about The Walk for Huntington's Disease May 28th
Kevin Jess announces charity closings and discusses what's next for WeHaveAFace.
Kevin Jess talks about the feeling of worthlessness and how the media may drive this feeling.
Jen and Kevin discuss possible implications of the overturning of Roe v Wade for the Huntington's Community
Jen and Kevin talk about hope, testing and other topics
Kevin and Jen talk about a number of things but are focusing on the upcoming International Education Day, June 25
Comments
Download from Google Play
Download from App Store
United States