Join us in Chicago

The Event
Following the success of its world premiere as an official selection of the 2025 Tribeca Festival, the award-winning Matter of Time is coming to Chicago to continue spreading EB awareness and bringing us closer to a cure!

We’re honored to bring the film to downtown Chicago for an unforgettable night celebrating local innovation and global impact. The evening will feature a cocktail hour, special screening, and a moving panel with EB families, researchers, and voices from the film to highlight how Chicago’s leadership in EB research is driving change felt around the world.

The Details
📍 WHERE: Feinberg Theater: 610 S Michigan Ave, Chicago, IL 60605
🗓️ WHEN: December 4th, 2025
⏰ TIMING: Cocktail hour from 6-7PM followed by the film screening and Q&A panel from 7-9:30PM
💥 BONUS: Check out our special ticket levels and join us for an exclusive after-party at Buddy Guy's Legends following the film from 9:30PM to midnight (strictly 21+)!

Get your tickets and explore unique sponsorship opportunities below. Every dollar raised through this event directly supports innovative research that will accelerate treatments and cures for EB!

Meet Charley
Our daughter Charley continues to amaze us with her humor, creativity, and courage. Every breakthrough in EB research brings us closer to the day when she, and everyone living with EB, can live free from pain.

The Matter of Time screening in Chicago is more than an event, it’s a chance to come together as a community that believes in progress. It’s an evening to connect, celebrate how far we’ve come, and raise critical funds that will move research even further, faster.

We’re proud to stand alongside EB Research Partnership in this mission and invite you to join us. Your support helps make this special night possible and fuels the research that’s changing lives every day.

-Brooke and Mike Kauf

Local Impact, Global Scale
Right here in Chicago, scientists supported by EBRP are leading groundbreaking research that’s transforming the future of EB and shaping the way cures are found for rare diseases everywhere.

At world-class institutions like Northwestern University and the University of Chicago, researchers are pioneering technologies with global potential: from AI-powered tools that detect deadly skin cancers in EB patients through photographs — bringing early diagnosis to families worldwide — to next-generation RNA therapies that repair the skin at the genetic level.

Brooke and Mike Kauf are devoted EB advocates and proud parents to their daughter, Charley, who lives with EB. Motivated by her courage and determination, they founded Change for Charley, an inspiring event that has raised over $1.3 million to accelerate innovative EB research. Brooke and Mike continue to channel their love for Charley into powerful action by raising awareness, strengthening community, and helping drive research forward that is both improving lives today and changing the future of EB.

Jeff Heddles is a dedicated philanthropist, advocate, and one of EBRP’s most impactful supporters. After learning about EB at a Pearl Jam concert and later discovering the devastating nature of EB and the groundbreaking research underway, Jeff committed himself to the cause. Since then, Jeff has personally donated, stood alongside EB families across the country, and become a passionate leader in the race to cure EB.

Michael Hund, MBA, is an award winning CEO with more than 20 years of experience in the innovative business models of venture philanthropy, impact investing and medtech entrepreneurship. His leadership has been highlighted by MIT, Yale, Harvard, Stanford, Cambridge, Forbes, and the Milken Institute. He is the CEO of EB Research Partnership, a game changing medical research organization dedicated to curing EB and scaling their model to rare disease. Under his leadership, EBRP has raised more than $70 million to transform the landscape from 2 to over 50 clinical trials and accelerated 3 FDA approved treatments. He is Executive Producer of the award-winning documentary Matter of Time and Executive Producer of Venture into Cures, combining stories of the patient and medical communities with musicians and actors to raise more than $12 million. Previously he served as the Director for the Multiple Myeloma Research Foundation and Paul Newman’s Hole in the Wall Gang, working on behalf of children battling life threatening illnesses.

Dr. Xiaoyang Wu is an Associate Professor in the Ben May Department for Cancer Research at the University of Chicago. His research focuses on epidermal stem cells, exploring their roles in tissue homeostasis, wound healing, and regenerative medicine. His lab investigates the molecular mechanisms governing stem cell behavior, particularly in skin biology. His work has led to the development of genetically engineered skin grafts capable of delivering therapeutic proteins, offering potential treatments for conditions like diabetes and hemophilia. Additionally, Dr. Wu has developed a lactate-responsive drug delivery system targeting the Warburg effect in cancer cells, aiming to improve the specificity and efficacy of cancer immunotherapies.

A natural-born storyteller, Matt builds stories with an ideal mix of passion and innovation. His lively, aesthetic eye and thoughtful sense of narrative have led to award-winning documentaries, music videos, and commercials. With an extensive digital background, Matt understands the ever-evolving landscape of media. He is drawn to directing pieces that will make audiences laugh, cry, and take action.

Dr. Amy Paller is a distinguished clinician and researcher specializing in pediatric dermatology. She serves as the Walter J. Hamlin Professor of Dermatology and the Chair of the Department of Dermatology at Northwestern University Feinberg School of Medicine. Additionally, she directs the NIH-funded Skin Biology and Diseases Resource-Based Center and practices at Lurie Children’s Hospital of Chicago, focusing on genetic and inflammatory skin disorders in children. Her research encompasses nanotechnology-based gene therapy, diabetic wound healing, and the role of glycosphingolipids in skin biology. Her laboratory has pioneered the use of spherical nucleic acids for topical gene suppression, targeting conditions such as psoriasis, atopic dermatitis, and diabetic ulcers. She has also led nearly 100 clinical trials in pediatric dermatology, contributing significantly to the understanding of biomarkers and patient-reported outcomes in skin diseases.