A Conversation About Rare Disease Storytelling
Five creative professionals. Four have PKU. One is a parent to those with PKU. All tell stories about the rare disease experience.
I was invited to participate in this conversation about rare disease storytelling by author, scientist, and publisher Jennifer J. Brown. It was a great way to celebrate PKU Awareness Month, especially considering that these accomplished creatives are also friends. You can read more about each participant down below, but first…
A Message From The Event Organizer
I organized this event as a look behind the scenes for artists to share their creative process producing film, animation, theater and books about living with a rare health condition. Each of the creatives had a diagnosis of Phenylketonuria (PKU), a rare health condition flagged by universal newborn screening, or in my case — children who did. I was thinking viewers may find these personal stories of real lived experience are inspiring! It’s often said “If they can see it, they can be it…” and so this glimpse of real lives as artists can touch the heart, and bring some joy into PKU Awareness Month.
Jennifer J. Brown
Rare Creatives’ Lives: Storytellers on Rare Disease in the Arts
Featuring Guest Creatives:
Kevin Alexander (US), Producer, Writer of documentary film
Kurt Sensenbrenner (US), Producer of animated documentary web series
Pauline O’Connor (UK), Author, Publisher of the Living With… book series
Jennifer J. Brown (US), Author, Scientist, Publisher
With Host:
Lillian Isabella (US), Storyteller, Playwright, Producer
Insights On:
1. Who first inspired them to become creatives?
2. What are their creative processes like now?
3. How storytelling shares rare disease lived experience?
4. Advice for those who dream of a creative career?
5. Why storytellers can spark advocacy in a rare disease community?
Guest Speakers:
Kevin Alexander is an adult living with PKU. He’s also a filmmaker, and since 2012 has been traveling the world as a PKU, newborn screening and rare disease advocate. 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.
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. “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.
Jennifer J. Brown is an independent author and publisher with a passion for nature, science and family. Her latest book is “When the Baby Is Not OK: Hopes and Genes”, a memoir on childbirth and parenting of two daughters diagnosed with PKU. She has a PhD in genetics from SUNY Stony Brook in New York for research at Cold Spring Harbor Laboratory and has published genetics, medical education and public health works in leading scientific and professional journals. She is currently a mentor for people living with PKU, and their caretakers, at the nonprofit National PKU Association.
Lillian Isabella 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. 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. She also wrote the 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”.
A Few Thoughts on Rare Disease Storytelling
A few thoughts that I didn’t share in the conversation, but are central to how I view storytelling.
These principles can help anyone in the rare disease community. But since I’m writing this at the end of PKU Awareness Month, and all of us who participated in the chat are affected by PKU, I’ll make it personal by sharing about our rare disease experience.
Our stories are powerful.
It’s PKU Awareness Month, and if you want to do something to help raise awareness but don’t know where to begin…
Then tell your story.
Your story is yours. You know it better than anyone else in the world. No one else owns it. It’s yours.
Which means when you tell it you do something that literally no one else in the world can do.
“What does PKU mean to you?”
“How does it affect your life?”
“What do you want others to know about it?”
Those are just some ideas to get you thinking. And the thing is…
You don’t have to share this publicly to make a difference. Social media and traditional media are options that work for some.
But a conversation with a friend over a cup of coffee is just as valuable.
Because whether you are sharing your story with many or just a single person…
Stories change things.
And it doesn’t matter where you live in the world, your connection to the PKU community, or the language you speak.
Because PKU has no borders. We are one global community. And we are all in this together.
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