Experiences with Adrenoleukodystrophy

18 public posts

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 oilI 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_Tolentinoin 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.

aidanjackseegerin 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.

monkeybusin AMN EASIER

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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).

SongStreamin AMN EASIER

Autophagy induction halts axonal degeneration in a mouse model of X-adrenoleukodystrophy

Recently, my doctor is using rapamycin test on ald children patients. The test is from this literature, but the literature was published in 2015. Is there any similar test conducted in other places? https://link.springer.com/article/10.1007/s00401-014-1378-8Recently, my doctor is using rapamycin test on ald children patients. The test is from this literature, but the literature was published in 2015. Is there any similar test conducted in other places? https://link.springer.com/article/10.1007/s00401-014-1378-8

jayxiein Parkinson's Movement

Viking Therapeutics Announces Top-Line Results from Proof-of-Concept Study of VK0214 in In Vivo Model of X-Linked Adrenoleukodystrophy

ABCD2 making steady progress... http://ir.vikingtherapeutics.com/2017-10-04-Viking-Therapeutics-Announces-Top-Line-Results-from-Proof-of-Concept-Study-of-VK0214-in-In-Vivo-Model-of-X-Linked-Adrenoleukodystrophy-X-ALDABCD2 making steady progress... http://ir.vikingtherapeutics.com/2017-10-04-Viking-Therapeutics-Announces-Top-Line-Results-from-Proof-of-Concept-Study-of-VK0214-in-In-Vivo-Model-of-X-Linked-Adrenoleukodystrophy-X-ALD

wilburlois15in AMN EASIER

Michael Conway - Adrenoleukodystrophy (ALD)

Dear HealthUnlocked - My name is Michael Conway and I have Adrenoleukodystrophy (ALD). I have trying to raise awareness of this condition by speaking to ALD Life, Raremark, CLIMB and local newspapers. I can send anyone links / attachment to my ALD story if anyone is interested.Dear HealthUnlocked - My name is Michael Conway and I have Adrenoleukodystrophy (ALD). I have trying to raise awareness of this condition by speaking to ALD Life, Raremark, CLIMB and local newspapers. I can send anyone links / attachment to my ALD story if anyone is interested.

MichaelConwayin AMN EASIER

Lenti-D investigational gene therapy in boys under 18 years old results.

This gene addition should result in the production of functional adrenoleukodystrophy protein (ALDP), a protein critical for the breakdown of very long chain fatty acids (VLCFAs). Buildup of VLCFAs in the central nervous system contributes to neurodegeneration in CALD.This gene addition should result in the production of functional adrenoleukodystrophy protein (ALDP), a protein critical for the breakdown of very long chain fatty acids (VLCFAs). Buildup of VLCFAs in the central nervous system contributes to neurodegeneration in CALD.

monkeybusin AMN EASIER

Tauroursodeoxycholic acid

http://link.springer.com/article/10.1007/s00401-016-1655-9 Tauroursodeoxycholic bile acid arrests axonal degeneration by inhibiting the unfolded protein response in X-linked adrenoleukodystrophy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030606/ Alzheimer's, Parkinsons's, Huntington's, ALD, AMNhttp://link.springer.com/article/10.1007/s00401-016-1655-9 Tauroursodeoxycholic bile acid arrests axonal degeneration by inhibiting the unfolded protein response in X-linked adrenoleukodystrophy https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030606/ Alzheimer's, Parkinsons's, Huntington's, ALD, AMN

monkeybusin AMN EASIER

Viking Therapeutics' VK0214 Receives FDA Orphan Drug Designation for the Treatment of X-Linked Adrenoleukodystrophy

Not holding my breath but it's a step forward http://www.checkorphan.org/news/viking-therapeutics-vk0214-receives-fda-orphan-drug-designation-for-the-treatment-of-x-linked-adrenoleukodystrophy#Not holding my breath but it's a step forward http://www.checkorphan.org/news/viking-therapeutics-vk0214-receives-fda-orphan-drug-designation-for-the-treatment-of-x-linked-adrenoleukodystrophy#

wilburlois15in AMN EASIER

Valproic Acid

Think he just wanted me out of the room . . http://m.hmg.oxfordjournals.org/content/19/10/2005.full Valproic acid induces antioxidant effects in X-linked adrenoleukodystrophy A specific HDAC inhibitor is Valproic acid (VPA), which is a class I-selective HDAC inhibitor with anticonvulsive (anti-seizureThink he just wanted me out of the room . . http://m.hmg.oxfordjournals.org/content/19/10/2005.full Valproic acid induces antioxidant effects in X-linked adrenoleukodystrophy A specific HDAC inhibitor is Valproic acid (VPA), which is a class I-selective HDAC inhibitor with anticonvulsive (anti-seizure

monkeybusin AMN EASIER

Metformin

Recent research "Metformin-induced mitochondrial function and ABCD2 up-regulation in X-linked adrenoleukodystrophy involves AMP-activated protein kinase." Pharmacological activation of AMPK can rescue the mitochondrial dysfunction and inhibit the pro-inflammatory response.Recent research "Metformin-induced mitochondrial function and ABCD2 up-regulation in X-linked adrenoleukodystrophy involves AMP-activated protein kinase." Pharmacological activation of AMPK can rescue the mitochondrial dysfunction and inhibit the pro-inflammatory response.

SongStreamin AMN EASIER

Another drug

About adrenoleukodystrophy Adrenoleukodystrophy, also known as adrenoleukodystrophy with linkage to X (X-ALD) chromosome is a neurometabolic disorder inheritance linkage to X recessive, caused by mutations in the gene ABCD1 .About adrenoleukodystrophy Adrenoleukodystrophy, also known as adrenoleukodystrophy with linkage to X (X-ALD) chromosome is a neurometabolic disorder inheritance linkage to X recessive, caused by mutations in the gene ABCD1 .

monkeybusin AMN EASIER

DHEA

Dehydroepiandrosterone up-regulates the Adrenoleukodystrophy-related gene (ABCD2) independently of PPARalpha in rodents. http://www.ncbi.nlm.nih.gov/pubmed/17686565 Here, we explored the in vitro and in vivo effects of DHEA on the expression of peroxisomal ABC transporters.Dehydroepiandrosterone up-regulates the Adrenoleukodystrophy-related gene (ABCD2) independently of PPARalpha in rodents. http://www.ncbi.nlm.nih.gov/pubmed/17686565 Here, we explored the in vitro and in vivo effects of DHEA on the expression of peroxisomal ABC transporters.

monkeybusin AMN EASIER

Antioxidants Halt Axonal Degeneration in a Mouse Model of X-Adrenoleukodystrophy

Antioxidants Halt Axonal Degeneration in a Mouse Model of X-Adrenoleukodystrophy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229843/ Oxidative stress underlying axonal degeneration in adrenoleukodystrophy: A paradigm for multifactorial neurodegenerative diseases?Antioxidants Halt Axonal Degeneration in a Mouse Model of X-Adrenoleukodystrophy http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3229843/ Oxidative stress underlying axonal degeneration in adrenoleukodystrophy: A paradigm for multifactorial neurodegenerative diseases?

monkeybusin AMN EASIER