Matter of Time Town Hall | EB Research Partnership | February 2026 скачать в хорошем качестве

Matter of Time Town Hall | EB Research Partnership | February 2026

Following the global release of Matter of Time on Netflix, members of the Epidermolysis Bullosa (EB) community came together for a powerful town hall conversation. In this special discussion, families, researchers, clinicians, and the filmmakers behind the documentary reflect on the impact of the film, the progress being made in EB research, and what comes next in the race for more treatments and ultimately a cure. You’ll hear from: Chris Ulmer – Special Books by Special Kids (Moderator) Michael Hund – CEO, EB Research Partnership Dr. Jean Tang – Stanford dermatologist and EB researcher Dr. Jamie Feinstein – Pediatric EB specialist Matt Finlin – Director of Matter of Time Karen Barzilay – Producer Hodges Caldwell Jr. – EB advocate Dave & Fran Molinaro – Parents of Deanna Molinaro Tricia Knuth – EB parent and advocate Together, they discuss: • What it means for the EB community to finally be seen on a global stage • The scientific breakthroughs bringing us closer to a cure • The power of storytelling and community • Why funding and awareness are critical to accelerating research Epidermolysis Bullosa (EB), often called “the butterfly disease,” is a rare genetic condition that causes extremely fragile skin that blisters and tears easily. Thanks to generous angel donors who cover operational costs, 100% of every donation to EB Research Partnership goes directly to research. Right now, every gift can go even further. 🦋 Support EB research: https://give.ebresearch.org/campaign/... 🎬 Watch Matter of Time on Netflix: https://www.netflix.com/title/82184383 Learn more about EB Research Partnership: https://www.ebresearch.org