MLD Awareness Event

Saturday July 23rd at Windjammer Lounge in Bloomington
Auction items, food, music, family friendly event

Benefit and MLD Awareness Event for Axel Riordan, local 4yr old battling Metachromatic Leukodystrophy.

People can RSVP on Facebook:

“It’s been nearly two years since the term “MLD” became a part of our daily conversation. Two years since we struggled to keep the chip basket full enough for Axel to double fist and dip into his Mexican cheese! Two years since the Riordan house consisted of two rambunctious boys jumping and running through the house! Where the biggest concern was bedtimes, keeping the boys out of mischief and cleaning them up after a day filled with mud puddles and dirt!! MLD has robbed not only this 4yr old boy but this entire family of the milestones EVERY parent documents and celebrates! MLD….. Metachromatic Leukodystrophy Disease is a RARE, rapidly progressing neurological disorder that tragically comes crashing in with a swift decline of EVERY bodily function we take for granted daily! Axel Riordan was diagnosed at the age of 2yrs old, August 30, 2020. After months of no answers, Lexi and Colby presented to the ER in desperation seeking answers. What they didn’t realize is that their whole life would shift in this moment when this diagnosis revealed that Axel lacks an enzyme needed to support his neurological function. Therefore, he began losing all gross and fine motor skills needed for basic life functions, such as sitting, eating, and talking. Life immediately was filled with doctor appts, therapy, specialists, and the daily daunting thought….. “How do we do this?” Well, fast forward two years later, and this family continues to show up and FIGHT. Advocacy has become a daily exercise. The love and dedication shown by these two parents can NOT go unnoticed. They spend their days pouring any sense of “normalcy” to their boys Axel and big brother Ryder. Any bit of downtime has been filled with opportunities to educate their local medical teams and involvement with MLD advocacy groups such as Rare and Ready Coalition, All Stripes, NORD MLD Home Study and Passage Bio Patient Council. Our goal as a community is to raise awareness to this awful disease! Newborn MLD screening MUST become a standard of care for every child! This routine testing can successfully treat these infants and save a lifetime of pain and heartbreak. Please join us as we come together to raise funds for the Riordan Family while 20% of all proceeds will continue to be donated to The CUREMLD Foundation!”


Labor Day – Expanding voting rights for all

By Mike Matejka Because of COVID, there is no Labor Day Parade this year.  It’s always a great event for our everyday workers to march proudly down the street and enjoys the festive crowd. If there had been a parade, this year’s Labor Day theme was to be “150 years of struggle: your right to vote.” …

Is federal mobilization the answer?

By Mike Matejka As President Donald Trump threatens to send federal marshals into Chicago, over the objections of Illinois Governor J.B. Pritzker, recall another Illinois Governor who protested the incursion of armed federal personnel into the city.   Those federal troops, rather than calming, escalated the situation, leading to deaths and violence. Illinois poet Vachel Lindsay…

In these troubled times, to my fellow white Americans

By Mike Matejka Our nation is at a unique watershed in human relations. African-Americans have been killed too many times in the past before George Floyd, but the response to this man’s death is international and all-encompassing. I was a grade-schooler during the Civil Rights 1960s. I watched Birmingham demonstrators hosed and the Selma – Montgomery…

Workers’ Memorial Day – Remember those whose job took their life

Looking around our community, when we say employer, most will respond to State Farm, Country, or Illinois State University.   We too often forget those who are building our roads, serving our food, or our public employees. COVID-19 has made us more aware of the risk.  Going to work every day for some people means…