Rare Creatives’ Lives
Join us for a LinkedIn Live PKU event tonight, 23 May at 6pm UK time.
Celebrate PKU Awareness Month with "Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts".
All guest creatives either have PKU, or have PKU in the family:
- Kevin Alexander (US), Producer, Writer, Videographer
- Kurt Sensenbrenner (US), Director, Producer, Cinematographer
- Pauline O’Connor (UK), Author, Publisher
- Jennifer J. Brown (US), Author, Publisher
- With Host:Lillian Isabella (US), Storyteller, Playwright, Producer
The panel will discuss:
- Who first inspired them to become creatives?
- What are their creative processes like now?
- How their storytelling shares rare disease lived experience?
- Advice for those who dream of a creative career?
- Why storytellers can spark advocacy in a rare disease community?
Kevin Alexander
Kevin is an adult living with PKU. His documentary "My PKU Life" is about his experience with PKU, and a short film "For Katy" illustrates the impact of a delayed PKU diagnosis and importance of newborn screening. He currently writes for his website, PKUJournal.com, is a volunteer for the National PKU Alliance, advocate with the Louisiana Metabolic Disorders Coalition, and member of the International Society of Neonatal Screening.
Kurt Sensenbrenner
Kurt is a freelance director, producer, and cinematographer who happens to have PKU. In 2017, his documentary “From Mass to the Mountain” aired on PBS and helped cause legislative change in Eastern Panama. In 2020, Kurt created an animated-documentary-comedy series about living with PKU, “The Low Phe Life”. Twelve episodes and 40+ screenings later, he’s in negotiations for a third season!
Pauline O'Connor
Pauline is an author of fiction and non-fiction, and a patient advocate. She campaigns for brain injury survivors and for those diagnosed with the rare disease, phenylketonuria (PKU). Her book “Living with PKU: A Low Protein Life with Phenylketonuria” (2022) is a valuable resource for adults and teens with PKU, or for families new to the disorder.
Jennifer Brown
is an independent author and publisher, her latest book “When the Baby Is Not OK: Hopes and Genes”, is a memoir on childbirth and parenting of two daughters diagnosed with PKU. She has a PhD in genetics from SUNY Stony Brook, and is a mentor for people living with PKU and their caretakers, at the National PKU Alliance.
Lillian Isabella
Lillian is a playwright, producer, and performing artist from The Bronx. She holds a BFA in Theatre from NYU, Tisch School of the Arts. Lillian uses verbatim documentary theatre as a vehicle to amplify ‘other’ voices and transmute personal pain into collective power. Recent productions include, PRIMORDIAL (The Tank - Core Production / NYC), HOW WE LOVE/F*CK (Cherry Lane Theatre / NYC – Finalist, Screencraft Film Fund), THAT’S HOW ANGELS ARRANGED (Metropolitan Playhouse / NYC).
Member discussion