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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
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Carriers

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
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Support

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 🙂
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Carriers
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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 🙂
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Support

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
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Carriers

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
AlexTLC profile image
AlexTLC
Partnerin Leukodystrophy Support

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!
AlexTLC profile image
AlexTLC
Administratorin Leukodystrophy Carriers

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!
AlexTLC profile image
AlexTLC
Administratorin Leukodystrophy Support

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 profile image
monkeybus
in AMN EASIER

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

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 profile image
Dixie1973
in AMN EASIER

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 profile image
COwithAMN
Volunteerin AMN EASIER

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 profile image
wobblybee
in Ataxia UK

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 profile image
monkeybus
in AMN EASIER

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 profile image
artortega78
in AMN EASIER

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 profile image
fightald
in AMN EASIER

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 profile image
fightald
Administratorin Parents of ALD Newborns

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 profile image
Chester_Tolentino
in Parents of ALD Newborns

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.
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aidanjackseeger
in Parents of ALD Newborns

Baicalein 5,6,7-trimethyl ether, a flavonoid derivative, stimulates fatty acid β-oxidation in skin fibroblasts of X-ALD

The purpose of the present study is to identify bioactive compounds with potential for X-linked adrenoleukodystrophy (X-ALD) pharmacological therapy.
The purpose of the present study is to identify bioactive compounds with potential for X-linked adrenoleukodystrophy (X-ALD) pharmacological therapy.
monkeybus profile image
monkeybus
in AMN EASIER
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