This story was originally posted in December 2014

If you’ve spent real time in Venice, California, you know Hinano Cafe. If you haven’t spent time in Venice, you should go to Hinano, maybe you’ll run into Neil Young. I did.

Hinano is one of those bars that’s been around forever and proudly maintains the ethos of a rowdy biker bar from the 1970s. It has a sawdust-covered floor, warm pitchers and a killer jukebox loaded with the Allman Brothers and Merle Haggard. The bar sits at the end of Washington Street, just a few feet from heaven: the Pacific Ocean.

In December 2004, I was sitting at the…


Susannah does not wear pajamas to bed, she wears battle gear. After her bath is finished, teeth brushed, stories read and songs sang, it is time for the grueling marathon that is Susannah’s rare, nocturnal epilepsy. Her nine-year-old brother, Nat, flies into the bedroom like Superman and hugs her tight. “Night Shasha!”

Before he flies back upstairs to save the world, Nat asks which one of us will sleep with Susannah tonight. We answer with a smile. Our remarkable son is too kind to ever let on, but we see it in his eyes. …


Today I read the author’s note preceding The Man Who Mistook His Wife for a Hat. I had read it before, last in 2016, and the same copy (on permanent loan from the Harlem branch of the New York Public Library) lived in the pocket of an old jacket I grabbed on my way out. I stood in the rain a few feet from our door with the dog pulling me into the woods, when Oliver Sacks punched me in the stomach. I was struck by more than his beautiful human narrative. It hit me like a ton of bricks…


Originally posted on the KIF1A.ORG blog on April 21, 2017

Parenting a kid with special needs requires a lot of writing. It seems like I’m constantly writing, which is ok because… well, I’m a writer. Sitting at my desk typing a blog post is far less stress-inducing than the painful daily scribble that comes along with a rare genetic disorder.

Early Intervention requests; reminders that doses changed because of a seizure yesterday; letters to the mayor about the ramp our building is stalling on; financial aid applications; thank you notes to therapists; Christmas cards in February; invoices from the Tooth…


Originally posted on the KIF1A.ORG blog in October, 2016

The vocabulary of a KIF1A mutation is very confusing. This variant has it’s own language, and it’s a foreign one. For instance, the word “progressive” is the opposite of a child making progress.

KIF1A mutations carry with them a progressive course, wherein a child will most likely not make progress. When speaking KIF1A, a progressive course means regression and worsening. This mutation’s progressive course leads to the most haunting word in any language: Degenerative.

One neuropathy associated with our specific KIF1A mutation is tremors. A small tremor in my child’s right…


Originally published on the KIF1A.ORG blog on April 17, 2017

Keeping our kids safe is every parent’s number one job. Even as an adult I associate protection and safety with my childhood home and my loving parents. It’s a great relief when our children finally learn where to go and who to find when they’re in danger. More than a relief, it’s a proud parental achievement worth celebrating: “We’re super parents! Our kids know where to go when they sense danger!” Mission accomplished, big exhale.

When your kid has a rare neurodegenerative disease causing her balance to worsen every day…


Originally posted on the KIF1A.ORG blog on August 21, 2017

Photo by Ryan Christopher Jones for WSJ

We need the world to know about KIF1A.

KIF1A is a gene. A mutation in that gene is causing the neurological disease our daughter was diagnosed with last year. KIF1A is stealing away Susannah’s steps and sight. She’s not alone. So we scream from the mountaintops. We fight to get kids the tests they need, and hope their diagnostic odyssey ends with a genetic report that has KIF1A.ORG listed as a resource for scared parents like us. When families reach out to the foundation, our army of parents and scientists…


Originally posted on March 8, 2018

A few months ago I was invited to speak to a group of medical students about KIF1A and how our daughter was finally diagnosed with such a rare condition. We talked about the difficulty of accessing appropriate genetic testing, and the delay in receiving results. A student asked me if we had a positive experience with our medical team. Just as I was about to answer, the phone rang and I had to run off, leaving the important question unanswered. Below is an email I sent to the student the next day.

***

Hi…


Before all this happened, I wrote plays. Before Susannah was diagnosed with a rare neurodegenerative disease; before we started the foundation; before I knew about motor proteins and phenotypes; before special needs; before rare disease policy; before biotech; before that moment in the hospital elevator when everything changed, one of my jobs was teaching high school and college-level playwrighting.

Over the course of a semester we covered what I believe to be the 12 elements needed to write a good play. The first day of class focused on four key elements of playwriting: two questions and two directives. …


Originally posted on August 15, 2017

Grace Niewijk recently interviewed me about the incredible scientists at The Jackson Laboratory and how they helped our KIF1A families develop a mouse model. We talked about KIF1A.ORG’s campaign #WeNeedAMouse and our quest for mouse models so scientists can study KIF1A, and ultimately find a cure for our daughter’s extremely rare neurogenetic disease, KIF1A Associated Neurological Disorder.

Grace asked me to tell her about the campaign, how it got started and what is was like to meet the scientists at Jax.

So, I told her.

I was contacting every scientist, physician and researcher who…

Luke Rosen

Founder of KIF1A.ORG, started in 2016 after our daughter was diagnosed with a rare, neurological disease. Now we’re in a race to find treatment.

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