Experiences with

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

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.

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

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.

Hello Everyone, The Aidan Jack Seeger Foundation was established to address the need for information and newborn screening with respect to Adrenoleukodystrophy.

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

Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN).

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.

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/s00401-014-1378-8

We are excited to share that the the Minnesota Adrenoleukodystrophy Registry Study (MARS) is open! Please click on the link to enroll your child. https://redcap.ahc.umn.edu/surveys/?s=MWFPYYRM8P Why are we conducting this research?

My newborn Child was diagnosed with X-linked Adrenoleukodystrophy back in June 2018. I was devastated and heart broken, all I could do was cry. I had 3 family members diagnosed with this same disease,one being my father that passed away in 2014 at the age of 44.

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-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.

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.

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, AMN

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#

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-seizure

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.

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 .