Changing the story we've been told about disfigurement.
C.A.R.D.D. unites professionals from media, healthcare, literature, education, and avocacy to end the invisibility and misrepresentation of facial disfigurement and difference in storytelling - through education, advocacy, and policy change.
Changing the story we've been told about disfigurement
C.A.R.D.D. unites professionals from media, healthcare, literature, education, and avocacy to end the invisibility and misrepresentation of facial disfigurement and difference in storytelling - through education, advocacy, and policy change.
Rachel Kudlak
Rachel Kudlak is the Marketing Lead at Phoenix Society for Burn Survivors. She develops and executes the organization’s marketing and digital strategy, helping share its mission with different audiences. Rachel creates online campaigns, writes story-focused content, and encourages real connections on digital platforms to highlight survivor voices and grow the organization’s reach. She is the co-creator and producer of the Phoenix Society’s podcast, “Girls with Grafts.” Rachel is a burn survivor herself, and her personal experience shapes her work. She brings authenticity, empathy, and purpose to every campaign. Before joining 3 Phoenix Society’s team, Rachel served as the Marketing and Communications Phoenix Fellow and worked in the SEO/ORM industry.
Charlene Pell
Charlene Pell is a plane crash survivor who sustained burns to 64% of her body, an experience that became the catalyst for a life dedicated to advocacy, education, and community building. She is the founder and executive director of Facing Forward, a 501 (c) (3) nonprofit that empowers individuals with facial differences through peer support, educational programs, and communication skills training.
The organization promotes public awareness, acceptance, and authentic media representation while advancing psychosocial support for people with disfiguring conditions. Charlene is co-founder of the Coalition for Authentic Representation of Disfigurement and Difference (C.A.R.D.D.), a national initiative dedicated to transforming how people with facial differences are portrayed in media, literature, and entertainment.
She holds a master’s degree in communication studies and is the author of the multiple-award-winning memoir In This Altered Body: A Survivor’s Story of Resilience and Love. Her research and work have been featured in the Journal of Burn Care & Research, the Los Angeles Times, Psychology Today, SKIN Magazine, and various periodicals.
Dr. Lise Deguire
Dr. Lise Deguire is a psychologist, author, childhood burn survivor, and author of the multiple award-winning book, Flashback Girl: Lessons on Resilience from a Burn Survivor. Dr. Deguire has appeared on NPR, NBC, ABC, and FOX. She is a 2 TEDx speaker (“SCARRED not Scary”), whose written work has been featured in Psychology Today, Huffington Post, The Psychotherapy Networker, and Thrive Global. Her piece in Cowbell Literary Magazine was recently nominated for a Best of the Net award. She is the co-editor of Disfigurement: Understanding Visible Difference (Routledge Press.)
