November 21, 2025 • 9 mins
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.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:16):
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, you
are loved, Hello, and welcome to We Have a Voice Radio.
(00:40):
My name is Kevin jess nob be your host today. Now,
today's monologue is going to be a little bit controversial.
I'll say that some people might be angry about what
I'm saying, but I think it needs to be said. So.
For decades, Huntington's families have buried their parents, their children,
(01:04):
their siblings, one generation after another, all while being told
to hold on just a little longer. And when a
MT one thirty came along, they said, we finally had it.
Not hope, not maybe, but thee breakthrough, the historic moment,
the one that would change everything. We heard researchers laughing
(01:25):
and smiling like they had just discovered fire. We saw
headlines practically screaming the first real treatment for Huntington's disease,
and families desperate, exhausted, traumatized by generations of death, finally
thought is this it? Are we saved? But here we
go again? Because the same people who looked straight into
(01:48):
the cameras, celebrating like victory was guaranteed, they're suddenly quiet
when the FDA says, hold on, these results aren't strong enough.
They didn't say a MT one failed, They didn't say
it was dangerous. They said the hype outran the proof.
The hype was louder than the science. That gets glossed
(02:11):
over pretty fast, doesn't it. And now the Huntington's Disease
Society of America, along with smaller advocacy groups, are scrambling
to fix what should never have happened. They're writing letters
begging the FDA to reconsider, pleading to hurry up the
approval process. Families are being rallied into a campaign because
(02:31):
regulators were asked to make a decision based on weak
evidence and exaggerated messaging instead of demanding stronger data from
day one. These organizations are now trying to push the
FDA to rush anyway. So let's be real. This isn't
just about a therapy. It's about trust. It's about scientists
(02:54):
who get to celebrate loudly but never have to apologize
when their optimism hurts me. It's about organizations who should
protect families, not rally them after the damage is already done.
It's about hope being dangled like a carrot, a gain,
and a gain with no accountability. Everyone wants a MT
(03:15):
one thirty work. Everyone wants the FDA to say, yes,
we're not against the treatment, We're against being misled. We
don't need hype, we don't need cheerleaders. We need truth,
and if the data is strong, prove it. If it's
the miracle they claim, show it in a proper trial.
(03:36):
Families deserve progress, not promises. They deserve treatments not headlines,
and they deserve researchers who are more interested in saving
lives than giving press quotes. Because until that happens, every
breakthrough will feel the same, a celebration at the podium
(03:56):
and another funeral at home. So here's the uncomfortable truth.
Excuse me. When a MT one thirty results were announced,
two very different kinds of leaders emerged. On one side,
we had doctor ed Wilde, smiling like Huntington's had been cured,
(04:18):
talking about world changing stuff, practically crowning a MT one
thirty as the first true treatment. His words didn't just
spark hope, they detonated it. They ignited a wildfire of
belief in families who had been suffering since before Edwald
was even born. But then comes doctor Herwig Lang, no confetti,
(04:41):
no fireworks, a man who started treating Huntington's disease patients
before most of these breakthrough celebrities even went to medical school,
And instead of selling miracles, he said one thing. No
one else was brave enough to say, slow down. He
looked at the data and said what a responsible scientist
(05:02):
is supposed to say. The results are promising, but small,
not placebo controlled, and not yet clinically meaningful. The translation
it's a good start, not a cure. Not yet calm down.
He warned that exaggerated claims were misleading families. He was
(05:23):
furious about how hope was being marketed like a product launch,
and that skepticism, that honesty is now proving to be
exactly right, because the FDA just slapped the brakes on
the same overhyped shortcut. He warned about. So here's the divide.
We've got doctor Wilde am one side selling excitement. We've
(05:44):
got doctor Lang, who protects families. One wants cameras, the
other wants the truth. One celebrates early, the other waits
for real proof. One fuels headlines, the other shields grieving
parents from fall promises. This isn't about who's nice. This
isn't about who respects the pain of generational disease or sorry.
(06:08):
This is about the who respects the pain of general disease.
If AMT one thirty works, Lange will celebrate. If it doesn't,
He'll still look families in the eye without having right
to them. That's leadership. Let's talk about hype scientists for
a moment. Every disease community has them, brilliant researchers who
(06:30):
turn into motivational speakers the second a camera shows up.
They give speeches like rock stars. They act like science
as a victory parde. They cry on stage, they talk
about historic moments. The crowd applauds because they want to believe.
These aren't a aren't fans at a concert. These are
families living with genetic death sentences. They aren't hungry for hype.
(06:54):
They're drowning for help. And hype damages people with irreversible
consequences because every time a scientist sells the word breakthrough
too early, kids with the gene think they might actually live.
Parents let go of funeral planning siblings believe they won't
have to watch each other die. Some even delay participation
(07:15):
in other trials, thinking they've found the cure. False hope
is not harmless. It steals years from the truth. It
breaks hearts harder than biology ever could. Sciences can be slow, painful, frustrating.
Good scientists respect that cheerleaders don't. Now. The FDA is
(07:38):
being pressured by a letter writing campaign approve a MT
one thirty. Now families are being rallied to push regulators
into rushing a therapy that hasn't even finished proving itself.
So listen carefully. We don't write letters to rescue hype.
We write letters to protect patience. If a MT one
(07:59):
thirty is real, great, then it can survive one thing,
proper proof. We fight for transparency, real data, and real approvals,
not shortcuts that might blow up in our faces later.
Here's what the community should demand in every letter, every petition,
every conversation. Demand rigorous Phase three evidence. Demand open reporting
(08:24):
of side effects and long term impact. Demand accountability. When
scientists over promise, demand patient safety over press quotes. Hope
should be earned, not advertised. We're not here to be cheerleaders.
We're not here to beg the FDA to skip steps.
(08:44):
We're here to make sure that when a treatment finally comes,
it's real, it's safe, and it's worth the decades of
waiting because Huntington's families don't get second chances, and we
will not accept another generation of false don's. Thank you
(09:04):
for listening. And if this, if that offended anyone, I
will apologize, but I'm I'm not apologizing for what I said.
I'm apologizing if it hurt you. And anyway, this is
we have a voice radio. And just remember you are loved.
It's time to speak up, It's time to speak out.
Welcome to We Have a Voice Community discussions about Huntington's
Disease and juvenile Huntington's Disease. Show host James Valvano, you
are loved, Hello, and welcome to We Have a Voice Radio.
(00:40):
My name is Kevin jess nob be your host today. Now,
today's monologue is going to be a little bit controversial.
I'll say that some people might be angry about what
I'm saying, but I think it needs to be said. So.
For decades, Huntington's families have buried their parents, their children,
(01:04):
their siblings, one generation after another, all while being told
to hold on just a little longer. And when a
MT one thirty came along, they said, we finally had it.
Not hope, not maybe, but thee breakthrough, the historic moment,
the one that would change everything. We heard researchers laughing
(01:25):
and smiling like they had just discovered fire. We saw
headlines practically screaming the first real treatment for Huntington's disease,
and families desperate, exhausted, traumatized by generations of death, finally
thought is this it? Are we saved? But here we
go again? Because the same people who looked straight into
(01:48):
the cameras, celebrating like victory was guaranteed, they're suddenly quiet
when the FDA says, hold on, these results aren't strong enough.
They didn't say a MT one failed, They didn't say
it was dangerous. They said the hype outran the proof.
The hype was louder than the science. That gets glossed
(02:11):
over pretty fast, doesn't it. And now the Huntington's Disease
Society of America, along with smaller advocacy groups, are scrambling
to fix what should never have happened. They're writing letters
begging the FDA to reconsider, pleading to hurry up the
approval process. Families are being rallied into a campaign because
(02:31):
regulators were asked to make a decision based on weak
evidence and exaggerated messaging instead of demanding stronger data from
day one. These organizations are now trying to push the
FDA to rush anyway. So let's be real. This isn't
just about a therapy. It's about trust. It's about scientists
(02:54):
who get to celebrate loudly but never have to apologize
when their optimism hurts me. It's about organizations who should
protect families, not rally them after the damage is already done.
It's about hope being dangled like a carrot, a gain,
and a gain with no accountability. Everyone wants a MT
(03:15):
one thirty work. Everyone wants the FDA to say, yes,
we're not against the treatment, We're against being misled. We
don't need hype, we don't need cheerleaders. We need truth,
and if the data is strong, prove it. If it's
the miracle they claim, show it in a proper trial.
(03:36):
Families deserve progress, not promises. They deserve treatments not headlines,
and they deserve researchers who are more interested in saving
lives than giving press quotes. Because until that happens, every
breakthrough will feel the same, a celebration at the podium
(03:56):
and another funeral at home. So here's the uncomfortable truth.
Excuse me. When a MT one thirty results were announced,
two very different kinds of leaders emerged. On one side,
we had doctor ed Wilde, smiling like Huntington's had been cured,
(04:18):
talking about world changing stuff, practically crowning a MT one
thirty as the first true treatment. His words didn't just
spark hope, they detonated it. They ignited a wildfire of
belief in families who had been suffering since before Edwald
was even born. But then comes doctor Herwig Lang, no confetti,
(04:41):
no fireworks, a man who started treating Huntington's disease patients
before most of these breakthrough celebrities even went to medical school,
And instead of selling miracles, he said one thing. No
one else was brave enough to say, slow down. He
looked at the data and said what a responsible scientist
(05:02):
is supposed to say. The results are promising, but small,
not placebo controlled, and not yet clinically meaningful. The translation
it's a good start, not a cure. Not yet calm down.
He warned that exaggerated claims were misleading families. He was
(05:23):
furious about how hope was being marketed like a product launch,
and that skepticism, that honesty is now proving to be
exactly right, because the FDA just slapped the brakes on
the same overhyped shortcut. He warned about. So here's the divide.
We've got doctor Wilde am one side selling excitement. We've
(05:44):
got doctor Lang, who protects families. One wants cameras, the
other wants the truth. One celebrates early, the other waits
for real proof. One fuels headlines, the other shields grieving
parents from fall promises. This isn't about who's nice. This
isn't about who respects the pain of generational disease or sorry.
(06:08):
This is about the who respects the pain of general disease.
If AMT one thirty works, Lange will celebrate. If it doesn't,
He'll still look families in the eye without having right
to them. That's leadership. Let's talk about hype scientists for
a moment. Every disease community has them, brilliant researchers who
(06:30):
turn into motivational speakers the second a camera shows up.
They give speeches like rock stars. They act like science
as a victory parde. They cry on stage, they talk
about historic moments. The crowd applauds because they want to believe.
These aren't a aren't fans at a concert. These are
families living with genetic death sentences. They aren't hungry for hype.
(06:54):
They're drowning for help. And hype damages people with irreversible
consequences because every time a scientist sells the word breakthrough
too early, kids with the gene think they might actually live.
Parents let go of funeral planning siblings believe they won't
have to watch each other die. Some even delay participation
(07:15):
in other trials, thinking they've found the cure. False hope
is not harmless. It steals years from the truth. It
breaks hearts harder than biology ever could. Sciences can be slow, painful, frustrating.
Good scientists respect that cheerleaders don't. Now. The FDA is
(07:38):
being pressured by a letter writing campaign approve a MT
one thirty. Now families are being rallied to push regulators
into rushing a therapy that hasn't even finished proving itself.
So listen carefully. We don't write letters to rescue hype.
We write letters to protect patience. If a MT one
(07:59):
thirty is real, great, then it can survive one thing,
proper proof. We fight for transparency, real data, and real approvals,
not shortcuts that might blow up in our faces later.
Here's what the community should demand in every letter, every petition,
every conversation. Demand rigorous Phase three evidence. Demand open reporting
(08:24):
of side effects and long term impact. Demand accountability. When
scientists over promise, demand patient safety over press quotes. Hope
should be earned, not advertised. We're not here to be cheerleaders.
We're not here to beg the FDA to skip steps.
(08:44):
We're here to make sure that when a treatment finally comes,
it's real, it's safe, and it's worth the decades of
waiting because Huntington's families don't get second chances, and we
will not accept another generation of false don's. Thank you
(09:04):
for listening. And if this, if that offended anyone, I
will apologize, but I'm I'm not apologizing for what I said.
I'm apologizing if it hurt you. And anyway, this is
we have a voice radio. And just remember you are loved.
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