Clinical Trial Testing H.P. Acthar Gel for ALS Terminated Due to Pneumonia Concerns

Embracing the Joyful Sadness of Life

This year for Father’s Day, I ordered a basket of gourmet caramel apples from Amy’s Candy Kitchen, a little shop in Cedarburg, Wisconsin. Amy’s Granny Smith apples are large and covered with sweet caramel, salty pecans, or other nuts. It is an explosion of flavor, magnifying both the…

European Initiative Targets Diagnosis, Treatment of Rare Diseases

A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of treatments for the 95% of such illnesses that currently don’t have one. The European Joint Programme on Rare Diseases (EJP…

How to Avoid the Sticky Points

Lately, I’ve been on alert trying to avoid sticky points. These are what I call particular points in my day when I’m most vulnerable to distractions. Because if I give in to the distraction, I end up lost in negative thoughts and I weaken the positive mindset I’ve created to…

Study in Twins Links Age-Related Changes in DNA Methylation with ALS

A study in identical twins or triplets found that changes in DNA marks, collectively known as DNA methylation and typically associated with aging, can like genetics play an important role to determining the development of amyotrophic lateral sclerosis (ALS). The four sets of ALS-affected and unaffected siblings carried age-related differences…

Faced with Incurable Disease, Fighting Is Winning

I am by nature a fixer. After my husband, Todd, was diagnosed with ALS, I found out modern medicine didn’t provide a cure. There’s no option for surgery. No drugs significantly improve outcomes. So, I turned to searching the internet for alternative therapies that might help. “I want to fight…