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Adrenomyeloneuropathy

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29 public posts

Two new AMN/ALD drug developments?

These passed my way today and look interesting, especially the SwanBio one: https://swanbiotx.com/investors-and-media/updated-preclinical-data-support-potential-of-first-aav-based-gene-therapy-as-a-treatment-for-adrenomyeloneuropathy/ I am not sure the second one means much other than that the FDA in
These passed my way today and look interesting, especially the SwanBio one: https://swanbiotx.com/investors-and-media/updated-preclinical-data-support-potential-of-first-aav-based-gene-therapy-as-a-treatment-for-adrenomyeloneuropathy/ I am not sure the second one means much other than that the FDA in
COwithAMN profile image
COwithAMN
Volunteerin AMN EASIER
1 year ago

Exercise Study of Function and Pathology for Women With X-linked Adrenoleukodystrophy

Objective: To evaluate abnormalities of the brain and spinal cord by MRI in order to understand the mechanisms leading to the disability of women with and the effect of physical exercise.
Objective: To evaluate abnormalities of the brain and spinal cord by MRI in order to understand the mechanisms leading to the disability of women with and the effect of physical exercise.
monkeybus profile image
monkeybus
in AMN EASIER
1 year ago

Where is everyone located?

As I was laying in bed last night, I was thinking about throughout all of the different countries in the world, where are most people with adrenomyeloneuropathy located. It seems to me, that the majority of people on this message board are from North America, or Europe.
As I was laying in bed last night, I was thinking about throughout all of the different countries in the world, where are most people with adrenomyeloneuropathy located. It seems to me, that the majority of people on this message board are from North America, or Europe.
bluejadedwho profile image
bluejadedwho
in AMN EASIER
1 year ago
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Improvement of motor function in patients with AMN

Wolfgang Köhler (Germany) [/i][/u] Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.
Wolfgang Köhler (Germany) [/i][/u] Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.
monkeybus profile image
monkeybus
in AMN EASIER
1 year ago

Externally-Led Patient-Focused Drug Development meeting (EL-PFDD)

Our proposed target patient population for this meeting is Adrenoleukodystrophy (ALD) in Adulthood: Men with adrenomyeloneuropathy (AMN) Men with cerebral ALD Symptomatic women with ALD The meeting will be held virtually, which will allow increased participation across the United States and the world
Our proposed target patient population for this meeting is Adrenoleukodystrophy (ALD) in Adulthood: Men with adrenomyeloneuropathy (AMN) Men with cerebral ALD Symptomatic women with ALD The meeting will be held virtually, which will allow increased participation across the United States and the world
SongStream profile image
SongStream
in Leukodystrophy Support
1 year ago

pioglitazone and adrenomyeloneuropathy

Has anyone tried or have any information on pioglitazone and adrenomyeloneuropathy
Has anyone tried or have any information on pioglitazone and adrenomyeloneuropathy
bluejadedwho profile image
bluejadedwho
in AMN EASIER
2 years ago

Adrenomyeloneuropathy and adolescence

Why do men with adrenomyeloneuropathy begin to go bald in adolescence, and in childhood their hair is thin?
Why do men with adrenomyeloneuropathy begin to go bald in adolescence, and in childhood their hair is thin?
Intensor profile image
Intensor
in AMN EASIER
2 years ago

Overview of the Ataxias

Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.
Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.
wobblybee profile image
wobblybee
in Ataxia UK
2 years ago

My brother in law

Concerning my brother in law, he’s got Adrenomyeloneuropathy not multiple sclerosis. It’s another form of neurological illness as well. Anyone familiar with it or any treatments for it?
Concerning my brother in law, he’s got Adrenomyeloneuropathy not multiple sclerosis. It’s another form of neurological illness as well. Anyone familiar with it or any treatments for it?
Luna-blade profile image
Luna-blade
in My MSAA Community
3 years ago

We are cured, again (again)

Sob-AM2 delivers a more potent and effective therapy for the most common type of ALD – adrenomyeloneuropathy (AMN) – than the original drug sobetirome. Sob-AM2 is a chemical compound created from sobetirome.
Sob-AM2 delivers a more potent and effective therapy for the most common type of ALD – adrenomyeloneuropathy (AMN) – than the original drug sobetirome. Sob-AM2 is a chemical compound created from sobetirome.
monkeybus profile image
monkeybus
in AMN EASIER
3 years ago

MitiQ lessens axonal degeneration and improves locomotion.

First I've read about Mito-Q helping Adrenomyeloneuropathy. Doesn't surprise me. I've read a lot of good things about Mito-Q
First I've read about Mito-Q helping Adrenomyeloneuropathy. Doesn't surprise me. I've read a lot of good things about Mito-Q
monkeybus profile image
monkeybus
in AMN EASIER
3 years ago

What are the other names of Adrenomyeloneuropathy?

I have 2 other names of AMN. It is Adrenomyelopathy and Adrenomyelodystrophy. Can anyone search for other names of AMN that I do not know?
I have 2 other names of AMN. It is Adrenomyelopathy and Adrenomyelodystrophy. Can anyone search for other names of AMN that I do not know?
artortega78 profile image
artortega78
in AMN EASIER
3 years ago

Possible causes of Ataxia

Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.
Pyramidal signs, sensory loss: acquired myelopathies; genetic myelopathies [adrenomyeloneuropathy; hereditary spastic paraparesis (HSP)]; Friedrich’s ataxia (FA); MS; NS. Sensory loss, hyporeflexia: AR ataxias; SPN and SG (“sensory ataxia”); GA; MF; AVED; NS.
wobblybee profile image
wobblybee
in Ataxia UK
3 years ago

Hello, everyone,

https://adrenoleukodystrophynews.com/2019/06/11/combo-of-antioxidants-a-potential-therapy-for-adrenomyeloneuropathy-trial-suggests/ Hello, everyone, today we saw a new amn trial, and it has been phase 2 trial.
https://adrenoleukodystrophynews.com/2019/06/11/combo-of-antioxidants-a-potential-therapy-for-adrenomyeloneuropathy-trial-suggests/ Hello, everyone, today we saw a new amn trial, and it has been phase 2 trial.
jayxie profile image
jayxie
in AMN EASIER
4 years ago

Survey-based Natural History Study for Men and Women with AMN

Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN).
Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN).
SongStream profile image
SongStream
in AMN EASIER
4 years ago

An artificial brain

Scientists have grown a miniature brain in a dish with a spinal cord and muscles attached, an advance that promises to accelerate the study of conditions such as motor neurone disease (and I can only assume Adrenomyeloneuropathy). Pack it all up, boys and girls. We are cured.
Scientists have grown a miniature brain in a dish with a spinal cord and muscles attached, an advance that promises to accelerate the study of conditions such as motor neurone disease (and I can only assume Adrenomyeloneuropathy). Pack it all up, boys and girls. We are cured.
monkeybus profile image
monkeybus
in AMN EASIER
4 years ago

Disease Maps

https://www.diseasemaps.org/leukodystrophy/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?
https://www.diseasemaps.org/leukodystrophy/adrenomyeloneuropathy/map/ What say, folks? Shall we all register and plot ourselves around the world?
monkeybus profile image
monkeybus
in AMN EASIER
5 years ago

DHEA

Does everyone with the adrenal form of adrenomyeloneuropathy take DHEA? If so please share your experiences. If not, and you’d like me to elaborate on why it’s absolutely essential, please let me know,
Does everyone with the adrenal form of adrenomyeloneuropathy take DHEA? If so please share your experiences. If not, and you’d like me to elaborate on why it’s absolutely essential, please let me know,
bluejadedwho profile image
bluejadedwho
in AMN EASIER
5 years ago

4-AP improves motor function in patients with AMN

Wolfgang Köhler (Germany) Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.
Wolfgang Köhler (Germany) Leg stiffness and walking disabilities are leading symptoms in patients with Adrenomyeloneuropathy (AMN). The reasons for this spasticity are spinal cord long nerve fiber and myelin damage.
monkeybus profile image
monkeybus
in AMN EASIER
6 years ago

Severe congestive heart failure caused by adrenomyeloneuropathy and hyperthyroidism

Here is one to cheer everyone up. As if we didn't have enough to worry about. https://www.researchgate.net/publication/281732912_Severe_congestive_heart_failure_caused_by_adrenomyeloneuropathy_and_hyperthyroidism
Here is one to cheer everyone up. As if we didn't have enough to worry about. https://www.researchgate.net/publication/281732912_Severe_congestive_heart_failure_caused_by_adrenomyeloneuropathy_and_hyperthyroidism
monkeybus profile image
monkeybus
in AMN EASIER
6 years ago
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