The ALS Association provides the latest research news & information relevant to the fight against this disease through press releases, blog posts, research webinars, newsletters and more.
Keep up-to-date on what’s going on in the world of ALS research and learn more about ALS research.
Every month, The ALS Association and the Northeast ALS Consortium (NEALS) invites leading ALS experts to discuss their area of expertise in our research webinar series. Register for an upcoming webinar below.
ROADS to a better ALS outcome measure: the new Rasch-Built Overall ALS Disability Scale (ROADS)
Thursday, February 20, 2020, 1:00 p.m. EDT
Speaker: Christina Fournier, MD, MSc, Emory University
This webinar will present the rationale for creating a new ALS disability scale, give an overview on the creation and validation of the ROADS, and will discuss advantage of using this new tool for ALS research and clinical practice. Patients with ALS and their caregivers will learn more about how ALS disease progression is measured and why it matters, and clinicians and researchers will be provided with specific details about the ROADS to allow its use in clinical trials and at the bedside.
Research and Support for Young Caregivers and Families Affected by ALS
Monday, March 9, 2020, 1:00 p.m. EDT
Speakers: Melinda Kavanaugh, PhD, MSW, LCSW, University of Wisconsin - Milwaukee
Despite the growing body of research on caregivers in ALS, the most vulnerable and isolated population of caregivers, children and youth caregivers, or "young caregivers," remain hidden. Young caregivers, between the ages of 5-19, participate in all aspects of daily care, from feeding and bathing, to toileting and transferring, all in relative isolation. A growing body of international young caregiver research highlights the emotional and social impacts, underscoring gaps in evidence-based programming across countries. A survey of U.S. families in ALS found almost one third of families have a child or youth under age 18 providing care. Recent data suggests sleep disruption and minimal caregiving training is common in young caregivers, increasing anxiety and setting up the potential for long-term health effects in young caregivers. Dr. Kavanaugh will provide a discussion of current research on children and youth caregivers in ALS/MND, including perspectives of the person with ALS, how research has been used to inform evidence-based interventions and supports, and a roadmap for future inclusion of children and youth in caregiving research, programming, and supports.
On our blog, The ALS Association, or one of our guest bloggers, discusses breaking research news in a more casual, easy-to-understand format than you may find in your average scientific journal.
