“Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts”, a panel discussion celebrates PKU Awareness Month, and premiered May 23, 2025. Auspicious timing, as the World Health Organization (WHO) WHA78 meeting considered (and later approved) a resolution for a rare disease focus in health care the same day.

Guest Creatives for Storytellers on Rare Disease

Panelists include Kevin Alexander, producer and author of documentary films “My PKU Life” and “For Katy.”

Kurt Sensenbrenner, director and producer of the animated documentary web series “The Low-Phe Life.”

Pauline O’Connor, author and publisher of books including Living With PKU: A Low Protein Life with Phenylketonuria.

And me, Jennifer J. Brown, author and scientist, with books including When the Baby Is Not OK: Hopes & Genes (February 2025), a memoir.

With Host:
Lillian Isabella, Storyteller, playwright, producer and author of STAT OpEd “The volunteer committee advising on newborn screening must be reinstated: The Advisory Committee on Heritable Disorders in Newborns and Children is critical to the nation’s health.”

Insights On Rare Creatives’ Lives

1. Who first inspired them to become creatives?
2. What are their creative processes like now?
3. How does storytelling share rare disease lived experience?
4. Advice for those who dream of a creative career?
5. Why and how storytellers spark advocacy in a rare disease community?

Guest Speakers in Film, Theater, Animation & Book Publishing

Kevin Alexander is an adult living with PKU. He’s also a filmmaker, and since 2012 has been traveling the world as an advocate on PKU, newborn screening and rare disease. His media projects include a short documentary called “My PKU Life” about his experience with PKU, a short film called “For Katy” which illustrates the impact of a delayed PKU diagnosis and the importance of newborn screening, and he currently writes for his website, PKUJournal.com. He’s a volunteer for the National PKU Alliance, an advocate with the Louisiana Metabolic Disorders Coalition, and a member of the International Society of Neonatal Screening. Find him at PKU Journal.

Kurt Sensenbrenner is a freelance director, producer, and cinematographer who happens to have PKU. His documentary work can be seen on some of the most influential platforms including peacock, PBS, and More Perfect Union. Kurt’s most recent collaborations have been with Patton Oswalt, NBC, and the Patton Veterans Project. In 2017, his debut feature length documentary “From Mass to the Mountain” aired on PBS and helped cause legislative change in Eastern Panama, where the documentary takes place. 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! Stay up-to-date by following the series at lowphelife.com.

Pauline O’Connor 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). A brain injury ended Pauline’s successful careers in winemaking and education. Now, she pursues her passions for advocacy and writing. 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. Her fiction short stories, The Red Hat Stories: An Anthology published in 2024. Catch up with her on her author and blog site at pigpen.

I’m an independent author and publisher with a passion for nature, science and family. My latest book is When the Baby Is Not OK: Hopes and Genes, a memoir on childbirth and parenting of my two daughters diagnosed with PKU. I have a PhD in genetics from SUNY Stony Brook in New York for research at Cold Spring Harbor Laboratory with Nobel Prize laureate Barbara McClintock, and have published genetics, medical education and public health works in leading scientific and professional journals. I’m currently a mentor for people living with PKU, and their caretakers, at the nonprofit National PKU Alliance.

Lillian Isabella is a playwright, producer, and performing artist from The Bronx (and my daughter). 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. Her plays have been produced and developed in NYC at The Tank, Cherry Lane Theatre, Metropolitan Playhouse, NYC Fringe Fest, Nuyorican Poets Poets Cafe, The NYC Health Department, and the United Nations. 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). Lillian is a proud member of SAG-AFTRA, AEA, and The Dramatists Guild. More about her projects at lillianisabella.com.

Rare Disease in the Arts Roundtable on YouTube

The roundtable is now up on YouTube  to view and share!

Here’s a brief excerpt clip on how artist to advocate just made sense, for me as an author.