Showing 4181 results for "als"

How I Use Recovery Plans to Face Stressful Events

This month, I have a few ALS-related activities scheduled that in the past could have easily left me feeling exhausted. But now that I’m following my own advice, I know my recovery plan will let me sail through the month with ease. I’ve often discussed the ALS symptoms of…

#RAREis Representation Program Promotes Equity, Diversity

Horizon Therapeutics has launched its #RAREis Representation program aimed at increasing diversity, equity, and inclusion among patients with rare diseases. There are about 400 million people worldwide living with a rare disease; for many of them, access to diagnosis, care, and treatments can be challenging. Accessing better care depends on…

Preparing for a Respiratory Emergency

ALS has compromised the breathing of my husband, Todd, to the point where his positioning — unless he is using the Astral noninvasive ventilator — can mean the difference between being able to breathe or not. We only realized how bad it was a couple of weeks ago when we…

Rare Disease Day Panel Opens Window to Patient Experience

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

A Progress Report on My New Year’s Intention to Simply Be

Every few months, I stop and check in on what’s working in my life and what’s not. It’s a personal wellness ritual that’s served me well in the years I’ve been living with ALS. Today, I’m evaluating how well I’ve been following my intention for 2022 to “simply…

Amylyx’s AMX0035 Now Under Review for Approval in Europe

The European Medicines Agency (EMA) has agreed to review a marketing authorization application (MAA) from Amylyx Pharmaceuticals requesting the approval of AMX0035 — a combination of two compounds — for the treatment of people with amyotrophic lateral sclerosis (ALS). The validation comes nearly two months after Amylyx filed the…

How Daily Nature Therapy Helps Relieve My Stress

I set my husband, Todd, up on his computer with his HeadMouse and sip-and-puff clicker. ALS has compromised his breathing, so I put on his noninvasive ventilator. I call my mom, who lives next door. She will keep her mobile phone in her pocket. If Todd needs anything, he…