The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Bereaved caregivers of people with motor neurone disease (MND) are at increased risk of prolonged grief disorder compared to the general bereaved population, a new study suggests. This indicates a need for greater support for bereaved caregivers of people with MND. The study, “Grief, depression, and anxiety…

Caregivers of people with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA) say a Dutch support program — one based on Acceptance and Commitment Therapy — empowered them to make better choices in line with their own needs, and to cope with distress, a study shows. The…

“I get by with a little help from my friends.” Or, in my case, A LOT. Two weeks ago, I discussed the ALS village. Last week, I wrote that I’ve survived 12 years since ALS darkened my doorstep. The latter is not possible without the former.

The majority of patients with amyotrophic lateral sclerosis (ALS) report wanting new treatments to stop their disease’s progression and so improve breathing function, muscle strength, and mobility, according to the results from a self-reported online survey of ALS patients and caregivers. These findings may help define future guidelines for the development…

Depression and anxiety in amyotrophic lateral sclerosis (ALS) patients, even at low levels, are linked and should be addressed together, a study reports. Moreover, according to the study, support to caregivers is essential as the patient-caregiver relationship is of key importance in coping with ALS. The study, “Death…

Integrated care is a definite advantage of multidisciplinary clinics according to amyotrophic lateral sclerosis (ALS) patients, but many complain about travel and mobility impediments as major barriers to attend such clinics, a Canadian study reports. Many patients also look at multidisciplinary clinics as potential ALS patient advocates to inform health…

Love, according to the Bible’s First Epistle to the Corinthians 13:7, “always protects, always trusts, always hopes, always perseveres.” As Labor Day approaches in the U.S., it is fitting to honor the one occupation that, within the above context, may aptly be characterized as a labor of love. Thank God…

We know dealing with amyotrophic lateral sclerosis (ALS) sometimes feels like an uphill battle, both for the patients and the caregivers. You feel like you’re not doing enough or as if the disease is taking up all your time and attention. To help you on your journey, we’ve gathered a few quotes we thought…

While few of us choose to become caregivers, many of us are faced with the task if a loved one is diagnosed with a chronic disease. The transition is a strange time for everyone involved, as the nature of the relationship changes for both the caregiver and patient. However, it is…