2nd Annual Walk With Charlie

A HUGE thank you to all who participated in or otherwise found ways to support Team Charlie's 2nd Annual “Walk with Charlie”, to raise awareness for today's International Batten Disease Awareness Day. You are the hope-givers, you are the do-gooders.

The turn-out was even bigger than last year, with several hundred showing up, including Mayor Scott Wehrli, Congressman Bill Foster, and Rush University Medical Center's Experimental Clinical Research Director Kendall Robbins.

More than $30,000 was raised to support experimental and compassionate pediatric rare disease treatment at Rush in Chicago - the only institution in the world providing genetic treatments for children with Charlie's ultra-rare CLN1 variant of Batten disease. Your support is essential to assist Rush's groundbreaking work to try and save rare disease kids, which would otherwise be unsupported because it does not fit traditional clinical funding models.

A special thanks is also due to our own Representative Janet Yang Rohr, who sponsored Illinois House Resolution No. 382, declaring today Batten Disease Awareness Day in the State of Illinois, and in doing so, recognized Charlie's contribution to advancing science:

"We commend Charlie Sims for advancing the scientific development of treatments for Batten disease for children everywhere, his family and friends for valiantly facing the difficulties of Batten disease, and the ongoing efforts of Team Charlie in their continued work of finding hope, giving love, and being good."

Our gratitude as well to Mayor Wehrli for Proclaiming June 9 "Team Charlie and Batten Disease Awareness Day" in Naperville. We are beyond fortunate to live in a community like Naperville, where Mayor Wehrli poignantly observed that "We don't leave any child behind."

Thank you as well to the Naperville Fire Department and Project Fire Buddies, who brought the entire Naperville Station 1 Fire Department to Prairie in support of their adopted fire buddy Charlie, and Little Pops NY Pizzeria of Lisle and Zarlengo's Italian Ice & Gelato for their generous food donations. Of course, none of this could have come together without the amazing work of our organizers Joanna O'Neill LaPerna, Alyssa Connolly, Andi Cannata Wojcik and A Pint for Kim - another Naperville-based rare disease organization.

Hope for rare disease families doesn't come easy. It's not something that's just handed out. Hope requires action.

We learned those words years ago from a good friend, Sharon King of Taylor's Tale: Fighting Batten Disease, who started her work over a decade ago to find a treatment for CLN1 Batten disease for her beloved Taylor. The development took longer than Taylor had, and even though Taylor never had a chance to receive the treatment, Sharon pressed on so that children like Charlie someday could have a shot at hope.

Today, Team Charlie works to carry on the fight for the children who will come after Charlie. To try and inspire hope.

We pave this road of hope one brick at a time, and each of you that have supported our cause are placing those bricks on the road. Every brick is a step forward towards a cure. Thank you from the bottom of our hearts.