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Adrenoleukodystrophy
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Lorenzo's Oil Revisited
https://en.wikipedia.org/wiki/
Adrenoleukodystrophy
Seems LO has competitors.
Adrenomix
adds another oil, [i]conjugated linoleic acid.[/i]
Aldixyl
also adds c[i]onjugated linoleic acid[/i] , plus "powerful antioxidants at high dosages containing [i]alpha lipoic acid[/i] ".
https://en.wikipedia.org/wiki/
Adrenoleukodystrophy
Seems LO has competitors.
Adrenomix
adds another oil, [i]conjugated linoleic acid.[/i]
Aldixyl
also adds c[i]onjugated linoleic acid[/i] , plus "powerful antioxidants at high dosages containing [i]alpha lipoic acid[/i] ".
monkeybus
in
AMN EASIER
10 months ago
TUDCA Study Summary
The following is the simpler summary of the study: "The paper is about a disease called X-linked
adrenoleukodystrophy
(X-ALD), which is a rare and serious condition that affects the nervous system and the adrenal glands.
The following is the simpler summary of the study: "The paper is about a disease called X-linked
adrenoleukodystrophy
(X-ALD), which is a rare and serious condition that affects the nervous system and the adrenal glands.
bluejadedwho
in
AMN EASIER
10 months ago
Newly identified ALD carrier
I came up positive for x-linked
adrenoleukodystrophy
. We have no family history. My question is.. Did anyone that is a carrier then go on for further testing? VCLFA panel? MRI? I have been reading so much and just need some guidance. Thank you so much! -Taylor
I came up positive for x-linked
adrenoleukodystrophy
. We have no family history. My question is.. Did anyone that is a carrier then go on for further testing? VCLFA panel? MRI? I have been reading so much and just need some guidance. Thank you so much! -Taylor
tpotts
in
Leukodystrophy Carriers
2 years ago
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Minoryx Study
https://www.minoryx.com/media/minoryx-raises-e51-million-to-support-marketing-authorization-application-and-launch-preparations-for-x-linked-
adrenoleukodystrophy
-(x-ald)-therapy/ Any feedback from people on this trial???
https://www.minoryx.com/media/minoryx-raises-e51-million-to-support-marketing-authorization-application-and-launch-preparations-for-x-linked-
adrenoleukodystrophy
-(x-ald)-therapy/ Any feedback from people on this trial???
Yhen
in
AMN EASIER
2 years ago
CCALD Study....Questions?
To find out more: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ Questions? Please ask in the comments section and I'd be happy to answer them 🙂
To find out more: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ Questions? Please ask in the comments section and I'd be happy to answer them 🙂
Hidden
Partner
in
Leukodystrophy Support
2 years ago
Exercise Study of Function and Pathology for Women With X-linked Adrenoleukodystrophy
Has this been posted here before? Have it a second time if so. Read afresh if not.
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 adrenomyeloneuropathy and the effect of physical exercise.
Has this been posted here before? Have it a second time if so. Read afresh if not.
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 adrenomyeloneuropathy and the effect of physical exercise.
monkeybus
in
AMN EASIER
2 years ago
Research Opportunity: Parents of Children with CCALD
To find out more: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ For any questions: suzanne@alextlc.org
To find out more: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ For any questions: suzanne@alextlc.org
Hidden
Partner
in
Leukodystrophy Support
3 years ago
Be a part of the first official study exploring the true impact of Childhood Cerebral ALD
You can find out more information by visiting our website: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ Please ask any questions in the comment section, or alternatively email info@alextlc.org
You can find out more information by visiting our website: https://www.alextlc.org/childhood-cerebral-
adrenoleukodystrophy
-ccald-research-study/ Please ask any questions in the comment section, or alternatively email info@alextlc.org
Hidden
Partner
in
Leukodystrophy Support
3 years 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
3 years ago
ALD Connect Webinars
The topics include: -Introduction to
Adrenoleukodystrophy
-ALD Connect Bootcamp for Symptomatic Women with ALD -ALD Connect Bootcamp for Men with AMN -ALD Connect Bootcamp for Cerebral ALD And many more!
The topics include: -Introduction to
Adrenoleukodystrophy
-ALD Connect Bootcamp for Symptomatic Women with ALD -ALD Connect Bootcamp for Men with AMN -ALD Connect Bootcamp for Cerebral ALD And many more!
Hidden
Partner
in
Leukodystrophy Support
3 years ago
Hydroxychloroquine
Article publised online in April 2021 Metabolic rerouting via SCD1 induction impacts X-linked
adrenoleukodystrophy
.
Article publised online in April 2021 Metabolic rerouting via SCD1 induction impacts X-linked
adrenoleukodystrophy
.
Dixie1973
in
AMN EASIER
3 years ago
Overview of the Ataxias
White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease;
Adrenoleukodystrophy
, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.
White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease;
Adrenoleukodystrophy
, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.
wobblybee
in
Ataxia UK
3 years ago
Endocrinology information
It says "The Society for Endocrinology is a UK-based learned society representing a global community of doctors, scientists and nurses who work with hormones. " https://www.yourhormones.info/ I was pleased to see that under the causes of Addison's disease, that
adrenoleukodystrophy
is listed.
It says "The Society for Endocrinology is a UK-based learned society representing a global community of doctors, scientists and nurses who work with hormones. " https://www.yourhormones.info/ I was pleased to see that under the causes of Addison's disease, that
adrenoleukodystrophy
is listed.
COwithAMN
Volunteer
in
AMN EASIER
3 years ago
Upregulating ABCD2/3
Four of the patients were affected with demyelinating cerebral
adrenoleukodystrophy
at ages between 7 and 18 years old. The fifth patient was affected with pure AMN and Addison's disease.
Four of the patients were affected with demyelinating cerebral
adrenoleukodystrophy
at ages between 7 and 18 years old. The fifth patient was affected with pure AMN and Addison's disease.
monkeybus
in
AMN EASIER
4 years ago
Does eating a diet rich in Vitamin B Complex slows down the progression of AMN?
Here is more information about Vitamin B Complex and their benefits: https://www.medicalnewstoday.com/articles/324856#about Here is information on how to deal with Peripheral Neuropathy from ALD news: https://adrenoleukodystrophynews.com/2020/02/20/dealing-with-peripheral-neuropathy-in-
adrenoleukodystrophy
Here is more information about Vitamin B Complex and their benefits: https://www.medicalnewstoday.com/articles/324856#about Here is information on how to deal with Peripheral Neuropathy from ALD news: https://adrenoleukodystrophynews.com/2020/02/20/dealing-with-peripheral-neuropathy-in-
adrenoleukodystrophy
artortega78
in
AMN EASIER
4 years ago
Probably Genetic Survey
A team of researchers at Probably Genetic is working tirelessly to get undiagnosed
Adrenoleukodystrophy
(ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.
A team of researchers at Probably Genetic is working tirelessly to get undiagnosed
Adrenoleukodystrophy
(ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.
fightald
in
AMN EASIER
4 years ago
Probably Genetic Survey
A team of researchers at Probably Genetic is working tirelessly to get undiagnosed
Adrenoleukodystrophy
(ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.
A team of researchers at Probably Genetic is working tirelessly to get undiagnosed
Adrenoleukodystrophy
(ALD) patients diagnostic answers faster. They are running a 1-minute survey in our community to understand the diagnostic journey of our families better.
fightald
Administrator
in
Parents of ALD Newborns
4 years ago
Help my Son
I want to know what kind of therapy it will help to my son to cure this
adrenoleukodystrophy
or what medication i need to do. I watched the movie of "Lorenzo's Oil" i have see the cure! The oil but i dont know how and where to find the oil
I want to know what kind of therapy it will help to my son to cure this
adrenoleukodystrophy
or what medication i need to do. I watched the movie of "Lorenzo's Oil" i have see the cure! The oil but i dont know how and where to find the oil
Chester_Tolentino
in
Parents of ALD Newborns
5 years ago
Aidan Jack Seeger Foundation
Hello Everyone, The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to
Adrenoleukodystrophy
.
Hello Everyone, The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to
Adrenoleukodystrophy
.
aidanjackseeger
in
Parents of ALD Newborns
5 years ago
Possible causes of Ataxia
White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease;
Adrenoleukodystrophy
, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.
White matter abnormalities: MS; adult-onset leukodystrophies (Alexander disease;
Adrenoleukodystrophy
, ALD). Diffusion-weighted abnormalities (“cortical ribboning”) and symmetric thalamic changes (“pulvinar” sign): CJD Spinal cord MRI is suggested for myelopathic signs.
wobblybee
in
Ataxia UK
5 years ago
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