John Oliver, on his news comedy show Last Week Tonight, gave a blistering commentary on the hypocrisy of celebrating Mother’s Day  in a country that marginalizes mothers at every turn in the workplace. He begins with the fact that America is tied with Papua New Guinea for the worst maternity leave benefits in the world. Up […]

This is a heart-rending situation.This husband and father, diagnosed with ALS in 2013, is a citizen of Togo but in the U.S. legally. Because of his status he cannot get health care services in Utah where he and his family live and he is ineligible for Medicare, Medicaid or Social Security Disability Income.The wife and

There is a growing trend among young people getting married. Recognizing that they already have enough, they are choosing to have wedding guests give to charity rather than give the couple gifts. Well done, and I hope this trend continues.

I am before you in a body that is broken. A.L.S. is a cruel disease. 12 years ago I was a healthy man who played with his children, a man who hugged and cuddled with his wife Suzanne. 12 years ago I liked to cook, I could do chores, I loved to sing in choir,

As I type this our firstborn child, our baby, is in labor at our local hospital. Our firstborn is in the process of delivering the firstborn for her and her husband.Our firstborn, our baby whom Suzanne spent more than 30 hours trying to deliver before the baby became distressed and required emergency Ceaserean Section. Our

If you want to call me a geek, that’s fine but you’re at the end of a long, long queue. I worked out the math for how many pALS would need to participate in a clinical trial to have a valid random sample group. Spoiler alert: Lots.I won’t bore anyone with the formula, but I’ll come clean

@Suzanne Boncel Heronemus and I made the Tribune this week for our start to elevating awareness of the difficulties faced by people with disabilities out in public. Our city’s leaders have been wonderfully open to this conversation. A Panera customer may have overheard management talking about their doorway, so our efforts may be bearing fruit already.

New Illinois Governor Bruce Rauner has made a mission of “fixing” the state’s budget, and we have just seen who he expects to pick up the load. He’s not tapping the wealthy, the corporations or even the middle class, he’s going after that well-known, entitled, deep-pocketed class called the Disabled. Rauner’s budget eliminates subsidies for regional and

Suzanne and I were honored with the opportunity to begin a dialog with Batavia’s leadership on making our city a safer, more inviting place for people living with physical disabilities.Read Eric Schelkopf’s article in the Kane County Chronicle.My presentation text: Good evening and thank you for this opportunity to speak with you.When  Batavia was founded,  families

The national ALS Association is failing to support the ALS community that so lavishly supported it. It is awash in cash from last summer’s Ice Bucket Challenge, a $120 million windfall it never expected. The IBC was a grassroots effort it did not need to plan, organize or run, yet people with ALS (pALS), their