Toward a Better Understanding of the Legend of Growing Pains

“Oh yes, I am wise, but it’s wisdom born of pain. — “I Am Woman,” Helen Reddy “Gain from pain” is not a new concept. The notion can be traced back several millennia to “The Ethics of the…

A patent application allowing MediciNova to use its investigational therapy ibudilast (MN-166) in combination with riluzole to treat people with amyotrophic lateral sclerosis (ALS) has been approved for issue in Japan. The patent request filed with the Japan Patent Office covers a wide range of oral doses and dosing…

I’ve always believed in the importance of having heroes and role models to help me cope with ALS. In fact, I keep a list of names in a special folder titled “ALS Inspiration.” But most of the people on my list don’t even have ALS. What they do have in common…

Mitsubishi Tanabe Pharma America (MTPA) has entered an agreement with Aquestive Therapeutics to market Exservan, an oral film formulation of riluzole, for treating amyotrophic lateral sclerosis (ALS) in the United States. Under terms of the agreement, Aquestive — the developer of Exservan — will be the exclusive manufacturer and…

People with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs), as well as their caregivers and healthcare professionals, are being recruited across the U.K. to provide input for the development of a web-based tool to help patients decide if they want a feeding tube. Patients are being…

Boston Children’s Hospital (BCH) is renaming its amyotrophic lateral sclerosis (ALS) Augmentative Communication Program to the Jay S. Fishman ALS-Augmentative Communication Program at Boston Children’s, the hospital announced. Fishman was CEO of the American insurance firm Travelers Companies. A vocal…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused because I’m my husband’s caregiver, I included doctors’ notes stating that my husband, Todd, is paralyzed. Apparently, that wasn’t enough, because I received a second round…

Indiana motorists can now sport a specialty license plate on their vehicles to show their support for amyotrophic lateral sclerosis (ALS), while contributing to the work into this neurodegenerative disease underway at the ALS Therapy Development Institute (ALS TDI). Proceeds from plate purchases will go to support studies taking place at…

“Pleased to meet you, hope you guess my name.” — Keith Richards and Mick Jagger, “Sympathy for the Devil” Last week, I experienced an abysmal customer service episode. Lasting the better part of a full workday, the bitter crescendo left…