Motor Neurons From Patients ‘Powerful’ Way of Spotting Therapies

The Pressure of Caregiving Makes Self-care Difficult

Knowing that so much is riding on me creates a lot of pressure. I don’t get sick days, vacation, or weekends off. Taking time off to attend to my health issues requires finding and paying for caregivers for my husband, Todd, who is paralyzed due to ALS. For example, I…

How I Fine-tune the Voices in My Head

I’ll admit to hearing voices — the voices in my head, that is. We’re all listening to our mental voices. It’s the constant chatter of inner dialogue or self-talk that leapfrogs through our thoughts, beliefs, questions, and ideas. Mostly the chatter is background noise, accompanying our daily activities and conversations.

Alector, GSK Team Up to Develop 2 Antibody Treatments for ALS

Alector and GlaxoSmithKline (GSK) have established a partnership to develop two investigational antibodies — called AL001 and AL101 — to boost the production of the progranulin protein as a potential treatment for neurodegenerative diseases, including amyotrophic lateral sclerosis (ALS). Low levels of progranulin, known as PGRN, which is a…

Grabbing Bits of Beauty to Rejuvenate

“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug that he’s been fighting for two weeks. His lungs keep filling with mucus, and I keep clearing them out. Just when we think he’s on the road to recovery because he has a long stretch…

Orphan Drug Status Recommended for Pridopidine in Europe

A branch of the European Medicines Agency (EMA) has recommended that Prilenia’s investigational therapy pridopidine be designated an orphan medicine to treat people with amyotrophic lateral sclerosis (ALS). Medicines with the potential to become safe and effective treatments for rare, life-threatening, or chronically debilitating conditions affecting no more than one…

United We Stand, Divided I Fall

“It wasn’t me she was foolin’, ‘Cause she knew what was she was doin’, When she told me how to walk this way.” Run-DMC’s hip hop adaptation of the Aerosmith classic “Walk This Way” conjures up images of every therapy session I’ve had during the ALS portion of my…