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Experiences with
Adrenomyeloneuropathy
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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
Volunteer
in
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
in
AMN EASIER
6 years ago
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