February 2026 Town Hall
In this Special Edition Town Hall - Matter of Time Behind The Film - moderated by Chris Ulmer of Special Books by Special Kids, this unique event brings together patients and families featured in the film, researchers driving breakthrough science, members of the production team, and more.
Meet the panel
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MODERATOR BIO:
Chris Ulmer is the creator and host of Special Books by Special Kids, a 501c(3) nonprofit and viral interview series intended to create a more inclusive world. SBSK started when Chris was a teacher for students with disabilities. Originally intended to be a book written by his students, SBSK soon grew to be video interviews of disabled people of all ages and diagnoses. Since 2015, Chris has interviewed hundreds of people across the world, including a years-long interview series with John Hudson Dilgen, while providing over $2,000,000 to those featured on the SBSK channel through a combination of grants and fundraising. His videos have a total of over 2 billion views, making a profound impact on his mission to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration.
PANELIST BIOS
Chris Ulmer is the creator and host of Special Books by Special Kids, a 501c(3) nonprofit and viral interview series intended to create a more inclusive world. SBSK started when Chris was a teacher for students with disabilities. Originally intended to be a book written by his students, SBSK soon grew to be video interviews of disabled people of all ages and diagnoses. Since 2015, Chris has interviewed hundreds of people across the world, including a years-long interview series with John Hudson Dilgen, while providing over $2,000,000 to those featured on the SBSK channel through a combination of grants and fundraising. His videos have a total of over 2 billion views, making a profound impact on his mission to normalize the diversity of the human condition under the pillars of honesty, respect, mindfulness, positivity and collaboration.
PANELIST BIOS
- Hodges Caldwell Jr: Hodges R. Caldwell Jr. Is the founder and CEO of the 501c(3) nonprofit EBLifeStyle Inc. Their mission is to donate lightweight portable mobility aids to the EB community to help them regain their mobility & independence. Hodges lives with the Junctional subtype of EB and understands the struggle of mobility first hand. Hodges has been involved in numerous clinical trials and research programs since the age of 4, including at Miami University and Stanford University under Dr. Jean Tang.
- Dave & Fran Molinaro: Dave and Fran are proud parents of two who live in Stoney Creek, Ontario. Their devotion to EB began when their first daughter, Deanna, was diagnosed with Recessive Dystrophic EB. When she was born, it took four hospitals in both Canada and the United States to give them advice and a proper diagnosis. Fran and Dave couldn't believe how difficult it was to gather information and support, let alone connect to other families coping with EB life. They decided to take a stand, to educate themselves and bring about EB awareness. With the help from those at the Toronto Hospital for Sick Children (Sick Kids), Debra of America, and other families nearby and across the country, they founded DEBRA Canada. a non-profit charitable organization that provides awareness and support to families learning to cope with EB.
- Trisha Knuth: Trisha Knuth is a devoted mother and tireless advocate for the EB community. After adopting two children, Charlie and Meili, who were both born with EB, Trisha has dedicated her life to raising awareness and hope for families affected by this rare disease. Featured in Matter of Time, her family’s story of love, loss, and resilience continues to inspire others. Trisha honors Charley’s memory and Meili’s strength by advocating for awareness, compassion, and a future without EB.
- Michelle & Eli Meyer: Michelle Meyer is a fierce EB advocate and the mother of 15-year-old Eli Meyer, who lives with Junctional EB. Michelle and Eli live in California with Eli’s father, Todd, and Eli’s siblings. Eli is featured in the film but before he was a movie star, he was a local celebrity and creator of the “Come Say Hi” campaign alongside his older sister Lily, a movement to encourage empathy, awareness, and acceptance of people who might look different.
- Dr. Jean Tang: Dr. Jean Tang is a Professor of Dermatology at Stanford. She is also the Director of the Clinical Scholars Track in the Dermatology Department and Co-Director of the AACR Molecular Biology in Clinical Oncology Workshop. In addition to caring for patients in the clinic, Dr. Tang is also a dedicated researcher with more than 12 years of clinical/translational experience in rare genetic diseases in dermatology. She was the Principal Investigator of the investigator-initiated, Phase 1/2A clinical trial of autologous gene-therapy skin grafts for RDEB, which was approved by the FDA last year as the third ever treatment for EB.
- Dr. Jamie Feinstein: Dr. Jamie Feinstein is a Professor of Pediatrics at the University of Colorado and the Pediatric Director of the Epidermolysis Bullosa Multidisciplinary Program at Colorado Children’s. Jamie is also the Medical Director at the Colorado Child Health Research Institute and Director of the Clinical Faculty Scholars Program, where he trains the next generation of clinical researchers.
- Matt Finlin: 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.
- Karen Barzilay: Karen spent much of her career producing highly rated and award-winning television with CTV and Bell Media in Canada. With extensive experience in broadcast news, award shows, variety programming, and live events, she has worked with some of the most talented personalities in the world. Her passion for high-quality programming has helped Door Knocker Media become an industry leader in the development and production of both traditional and digital content.
- Michael Hund: Michael Hund 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. 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 $80 million to transform the landscape from 2 to over 50 clinical trials and accelerated 3 FDA approved treatments. He is also an 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.
EBRP live Town Halls
Our monthly Live Town Halls help drive research and awareness with informative discussions led by trusted specialists and advocates in the EB space. Topics include current research, clinical trials, caring for loved ones with EB, and more. Town Halls are open to anyone interested in learning more about EB and the future of EB treatment and care. Check out more of our Town Halls here.
To register for our next Live Town Hall, click here.
To register for our next Live Town Hall, click here.
