Adrenoleukodystrophy News

September 23, 2020September 23, 2020

Phase 1 Study of VK0214 as Potential Oral Treatment for ALD to Open

Viking Therapeutics is launching a Phase 1 clinical trial testing increasing doses of VK0214, its oral investigative molecule to treat adrenoleukodystrophy (ALD), against a placebo in healthy people. “We are excited to ... Read more

September 23, 2020September 23, 2020

Warning Signs of Depression in Adrenoleukodystrophy Caregivers

Adrenoleukodystrophy News

It can be exhausting and stressful to be the parent or caregiver of someone who has a chronic disorder such as adrenoleukodystrophy. Because stress can trigger anxiety and depression, among other ... Read more

September 16, 2020September 16, 2020

The Spoon Theory for Adrenoleukodystrophy Patients

Adrenoleukodystrophy News

Adrenoleukodystrophy (ALD), a disease associated with neurologic dysfunction and adrenal insufficiency, often may cause you to be tired and stressed. Trying to explain to family and friends, many of whom ... Read more

September 9, 2020September 9, 2020

Raising Awareness of Adrenoleukodystrophy

Adrenoleukodystrophy News

Rare diseases like adrenoleukodystrophy (ALD) are not well-known and often misdiagnosed. Raising awareness could help lead to better diagnosis and more research into potential treatments. Here is some information about ... Read more

September 2, 2020September 2, 2020

Seizure Monitors for Adrenoleukodystrophy

Adrenoleukodystrophy News

Seizures are a common symptom of cerebral adrenoleukodystrophy, especially as the disease progresses. Using seizure monitors can help you manage, and possibly better treat your child’s condition. What is ALD? Adrenoleukodystrophy (ALD) ... Read more

August 26, 2020August 26, 2020

Seizure Diaries for Adrenoleukodystrophy

Adrenoleukodystrophy News

Seizures are a common symptom of childhood cerebral adrenoleukodystrophy (CALD), especially as the disease progresses. Rare cases of seizures in people with adult-onset adrenoleukodystrophy (ALD) also have been reported. If ... Read more

August 19, 2020August 19, 2020

Female Carriers of Adrenoleukodystrophy

Adrenoleukodystrophy News

If you are a woman who has a family member diagnosed with adrenoleukodystrophy (ALD), you may be wondering if you are a carrier of the disease. You may find the following ... Read more

August 5, 2020August 5, 2020

Medical Alert Cards for Adrenoleukodystrophy

Adrenoleukodystrophy News

Depending on the type of disease you have or your child has, adrenoleukodystrophy (ALD) can lead to an adrenal crisis or to sudden symptoms like seizures and low blood pressure. ... Read more

July 29, 2020July 29, 2020

Mindfulness for ALD Caregivers

Adrenoleukodystrophy News

Providing constant care for a patient with a chronic disease, such as adrenoleukodystrophy, can be emotionally draining and stressful. However, a practice called mindfulness may help caregivers to cope with ... Read more

July 22, 2020July 22, 2020

About ALD Connect

Adrenoleukodystrophy News

If you or a family member has adrenoleukodystrophy (ALD), then one resource you may want to use is ALD Connect. What is ALD Connect? A group of clinicians, scientists, patients, ... Read more

July 20, 2020July 21, 2020

AMN May Be Diagnosis for Patients With Spinal Cord Lesions, Case Report Says

Adrenoleukodystrophy News

Adrenomyeloneuropathy (AMN) should be considered in the differential diagnosis of patients showing signs of spinal cord lesions caused by the loss of myelin, the fatty sheath that wraps around and ... Read more

July 15, 2020July 15, 2020

Preimplantation Genetic Diagnosis for Adrenoleukodystrophy

Adrenoleukodystrophy News

If you and your partner are both carriers for adrenoleukodystrophy (ALD), or if one of you has a type of ALD (such as adrenomyeloneuropathy (AMN) or Addison’s disease), you may be ... Read more

July 8, 2020July 8, 2020

Prenatal Genetic Diagnosis for Adrenoleukodystrophy

Adrenoleukodystrophy News

If you know that you and your partner are carriers of adrenoleukodystrophy (ALD) and risk passing the disease to your children, you may be considering a prenatal genetic diagnosis. What ... Read more

July 1, 2020July 2, 2020

What to Expect of a Physiotherapy Session for ALD Patients

Adrenoleukodystrophy News

Physiotherapy can be helpful to people with adrenoleukodystrophy (ALD), a rare genetic disease characterized by a buildup of toxic fatty molecules within cells. While there is currently no cure for ALD, ... Read more

June 29, 2020June 30, 2020

Certain Epigenetic Medicines May Help Compensate for ABCD1 Gene Deficiency, Study Suggests

Adrenoleukodystrophy News

Treatment with certain epigenetic medicines may help compensate for a deficiency in the ABCD1 gene in patients with adrenoleukodystrophy (ALD), a study suggests. Researchers found Merck’s epigenetic modifier Zolinza (vorinostat) ... Read more