Adrenoleukodystrophy News

February 24, 2021February 25, 2021

New Cut-off Levels for Blood VLCFAs May Aid X-ALD Diagnosis

Proposed new cut-off levels for values of very long-chain fatty acids, or VLCFAs — whose buildup characterizes X-linked adrenoleukodystrophy (X-ALD) — show higher sensitivity and specificity for detecting genetically confirmed ... Read more

February 17, 2021February 17, 2021

Adrenoleukodystrophy and Diet

Adrenoleukodystrophy News

Adrenoleukodystrophy (ALD) is a rare genetic disease in which very long-chain fatty acids (VLCFAs) build up inside cells in males, causing a number of behavioral and neurological problems. Here is ... Read more

February 10, 2021February 11, 2021

Emergency Management of Adrenal Insufficiency in Adrenoleukodystrophy

Adrenoleukodystrophy News

An estimated 80% of men and boys with adrenoleukodystrophy (ALD) develop adrenal insufficiency — when the body does not produce enough of the steroid hormone cortisol. By comparison, only around ... Read more

February 3, 2021February 4, 2021

Leriglitazone Improves Motor Function in Early Symptomatic AMN Patients

Adrenoleukodystrophy News

Treatment with Minoryx Therapeutics’ leriglitazone in a Phase 2/3 clinical trial was found to improve motor function in people with early symptomatic adrenomyeloneuropathy (AMN), one of the most common types of ... Read more

February 3, 2021February 3, 2021

Paramedical Treatment for Adrenoleukodystrophy

Adrenoleukodystrophy News

If you or your child have adrenoleukodystrophy (ALD), you may benefit from paramedical treatments — services such as massage, and occupational and speech therapy, that have been shown to help ... Read more

January 27, 2021January 27, 2021

Respite Care for CALD Patients

Adrenoleukodystrophy News

Providing care for a child with cerebral adrenoleukodystrophy (CALD) can leave you physically, mentally, and emotionally spent. At some point, your body and mind will need replenishing. Therefore, finding respite ... Read more

January 19, 2021January 20, 2021

Ways Extended Family Can Help in Care for Child With CALD

Adrenoleukodystrophy News

If there’s a child in your extended family with childhood cerebral adrenoleukodystrophy (CALD), you know how stressed and overburdened the immediate family is. Here are some ways you can help them ... Read more

January 13, 2021January 13, 2021

Planning for Your Future With Adult-onset Adrenoleukodystrophy

Adrenoleukodystrophy News

Learning that you have adrenomyeloneuropathy (AMN), the adult-onset form of adrenoleukodystrophy (ALD), can come as a shock. Here are some steps you might want to take to help plan for a ... Read more

January 7, 2021January 8, 2021

Blood Neurofilament Light Chain Levels May Be Myelopathy Biomarker in ALD

Adrenoleukodystrophy News

Elevated blood levels of a nerve cell-derived component known as neurofilament light chain (NfL) could be a potential biomarker for myelopathy — spinal cord degeneration — in patients with adrenoleukodystrophy (ALD), ... Read more

January 6, 2021January 6, 2021

How to Improve Your Sleep if You Have Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy News

Adrenoleukodystrophy (ALD), a rare genetic disorder that primarily affects the nervous system and adrenal glands, can cause an array of neurological symptoms that can impair a patient’s ability to get ... Read more

December 18, 2020January 23, 2021

EURORDIS Award Contest Welcomes Photos of Life With Rare Disease

Adrenoleukodystrophy News, COVID-19 News

The annual EURORDIS Photo Award contest is inviting people worldwide to visually express what life is like with a rare disease, while raising awareness through their work of these disorders. ... Read more

December 16, 2020December 16, 2020

Adrenoleukodystrophy and Exercise

Adrenoleukodystrophy News

Many patients with the adult form of adrenoleukodystrophy (ALD), called adrenomyeloneuropathy (AMN), experience weakness and stiffness in their leg muscles, leading to trouble walking. A careful exercise plan may help ... Read more

December 9, 2020December 9, 2020

The ALD National Registry

Adrenoleukodystrophy News

Adrenoleukodystrophy (ALD) is a rare genetic disorder affecting around one in 21,000 males in the U.S. Researchers think that one in 16,800 women are carriers (have a copy of the ... Read more

December 2, 2020December 3, 2020

Autobahn Plans to Start Clinical Development of AMN Candidate ABX-002 in 2021

Adrenoleukodystrophy News

Autobahn Therapeutics has successfully completed a pre-investigational new drug (IND) meeting with the U.S. Food and Drug Administration (FDA) regarding the development plan for its therapy ABX-002, a thyroid hormone ... Read more

December 2, 2020December 2, 2020

Individualized Education Plan (IEP) for Children With Adrenoleukodystrophy

Adrenoleukodystrophy News

When adrenoleukodystrophy (ALD) occurs in children, it is called childhood cerebral ALD or CALD, and it leads to serious neurological disorders. Children with CALD may experience learning and behavioral difficulties, ... Read more