Max set behind new challenge to raise awareness for rare diseases

CHICAGO — A Chicago firefighter is on a mission to help others on and off the job, with his inspiration coming from his 7-year-old daughter Adriana.  

“She has a rare disease called galactosemia and basically, she can’t break down the sugar in dairy,” said father, Jim Kelly.  

Kelly and his wife, Maria, only found out after Adriana was born through a screening done by the state of Illinois. 

“They actually called us and told us, ‘you have to stop using breast milk and utilize soy,’ and that’s what we did,” Kelly said.  

Adriana is now fine but what the Kelly’s soon learned is not all states screen as effectively as Illinois. As a result, other families have lost their children to the rare disease. 

In a short time, the couple learned about the State of Affairs with rare diseases in the United States.  

“With the rare disease community, there are over 7,000 rare diseases. Some people actually say that number is closer to 10,000. In the United States alone, there are about 30 million people who have a rare disease,” Kelly said. “So our rationale is with the foundation that we created was someone you know or someone you love has a rare disease whether you know it or not.” 

So, the Marine and fitness fanatic is storming the beach and taking the hill as part of a foundation he and his wife Maria, a public school teacher, formed called the Orphan Disease Collective. Diseases such as cystic fibrosis and Lou Gehrig’s disease, also known as ALS, which is something Bears great Steve ‘Mongo’ McMichael is currently battling, are under the rare disease umbrella. 

In 2014, the Ice Bucket Challenge raised millions of dollars to advance ALS research. In 2022, enter the Max Set Challenge. 

“My goal with the Max Set Challenge is to do a max set of the pull-ups or the pushups and then challenge others to do a max set of their favorite exercise which can be anything,” Kelly said. “Pull-ups, pushups, running, bench press, swats, swimming, cycling, it doesn’t matter. The goal was to have something that people could relate to our foundation.” 

Right now, Kelly says he has a challenge out to one of the biggest stars in the world: Dwayne ‘The Rock’ Johnson.

“To incentivize it, I have made a personal donation of $50,000 to Shriner’s Hospital,” Kelly said. “I will be giving that donation on behalf of and in honor of anyone who can facilitate that pull-up contest between myself and The Rock.”

So challenge on to The Rock and anyone interested in exercising for a good cause. As Kelly says, pick your Max set and spread the challenge for a better day for all.