advocacy

May marks amyotrophic lateral sclerosis (ALS) awareness month, a time dedicated to raising awareness about ALS and answering the call to support those affected by the neurodegenerative disease. In the U.S. and internationally, baseball games, conferences, flag raisings, and community events are held during ALS Awareness Month to honor…

I must use the privilege of this column to acknowledge the passing of one of our ALS heroes, Ady Barkan. A young, stalwart, and dedicated husband and father, Ady spent the final few years of his life fighting for those without adequate healthcare in this country. Ady…

As I consider the progress we’ve made on ALS, I can’t help wondering if our overall awareness will continue to grow and lead us to even more sensitivity and advocacy. What real action will take place? Will initiatives be developed and sustained? Will we patients be closer to…

The Greater Chicago Chapter of the ALS Association is in high gear to end amyotrophic lateral sclerosis (ALS), with multiple awareness and fundraising events taking place throughout June and July. On June 4, after two years of walking in their respective neighborhoods, supporters returned to Cantigny Park in…

Throughout February, many patient columnists like me who write for BioNews, the parent company of this website, are writing columns recognizing Rare Disease Month, which culminates in Rare Disease Day on Feb. 28. Not only are we encouraging our readers to reach across patient community lines to learn…

“Keep off the path, Beware of the gate, Watch out for signs that say ‘hidden driveways.’ Don’t let the chlorine in your eyes, Blind you to the awful surprise, That’s waitin’ for you at, The bottom of the bottomless, Blue, blue, blue pool, You’re livin’ in your own private Idaho.”…

Ady Barkan was a new father and activist when, at age 32, he learned that he had amyotrophic lateral sclerosis (ALS). His ensuing fight for universal healthcare while dealing with the progressive neurodegenerative disease is at the center of  “Not Going Quietly,” a film debuting on PBS today,…

Calling it the “biggest challenge” of his life, a U.K. rugby fan and motor neurone disease (MND) advocate, Martyn Clarke, is undertaking a Herculean effort — seven Half Ironman triathlons in seven days — to raise funds for the MND Association. Clarke, 47, was inspired to push himself to…

“All the Bush League batters Are left to die on the diamond In the stands the home crowd scatters For the turnstiles.” Twice in my post-ALS life, Neil Young’s song “For the Turnstiles” has struck me smack dab in the center of my forehead. As the dust finally settled…

“You say you got a real solution, Well, you know, We’d all love to see the plan. You ask me for a contribution, Well, you know, We’re all doing what we can.” John Lennon’s lyrics from the song “Revolution” by the Beatles capture some of my concerns regarding the…