Posts by: Mary Chapman

News, syndicated

To empower and equip members of the rare disease community to engage state leaders in matters of importance to patients and their families, the National Organization for Rare Disorders (NORD) ... Read more

October 28, 2020October 28, 2020

UK Organization ‘Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner

News, syndicated

A photo of a bespectacled young boy, his red baseball cap slightly askew as he enjoys time outside, will be featured on the front cover of an upcoming calendar in ... Read more

October 28, 2020October 28, 2020

Planning for the Future When Your Child Has Adrenoleukodystrophy

Health Insight

You were likely prepared to hear your child was ill, but a diagnosis of a rare and progressive disorder like adrenoleukodystrophy (ALD) could still come as a shock. Among next steps you might ... Read more

October 14, 2020October 14, 2020

Independent Living for Adults With Adrenoleukodystrophy

Health Insight

Having a chronic condition such as adrenoleukodystrophy (ALD) can be particularly concerning if you are living alone. But there are steps you can take to help you live well and independently. Learn about ... Read more

October 9, 2020October 9, 2020

Same But Different Asks Public to Vote on ‘Glimmer of Hope’ Calendar Photos

News, syndicated

Same But Different, a nonprofit U.K. group that uses art for social change, is inviting people to choose their favorite photographs in a calendar contest to heighten awareness of rare diseases, ... Read more

September 23, 2020September 23, 2020

Warning Signs of Depression in Adrenoleukodystrophy Caregivers

Health Insight

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

Activities Underway for Newborn Screening Awareness Month

News, syndicated

As it does each September during Newborn Screening Awareness Month, Baby’s First Test is sharing information and stories that highlight efforts throughout the U.S. to bring attention to newborn testing. Baby’s ... Read more

September 16, 2020September 16, 2020

The Spoon Theory for Adrenoleukodystrophy Patients

Health Insight

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 2, 2020September 2, 2020

Seizure Monitors for Adrenoleukodystrophy

Health Insight

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

Health Insight

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