048 – Finding a Mouse With Luke Rosen, KIF1A.org

This week we are joined by former screenwriter/actor, founder of KIF1A.org, and 2018 Rare Champion of Hope Honoree, Luke Rosen, who talks to us about the “We Need a Mouse” campaign.


Luke and Kyle met at a rare disease event. When Kyle had their picture taken with his phone, Luke noticed the “2 Disabled Dudes” logo on Kyle’s cell phone case and only then recognized that Kyle was part of this podcast, which Luke listened to regularly! (Please remember to check out our merchandise page, because this shows us that it can help form connections!)

 

Luke was at that event because his daughter Susanna was diagnosed with a rare disease. When he spoke about his daughter, you can hear him smile even over the audio, as he explains that she is the strongest little girl there is. Of course in character and patience, but literally too: she has ridiculous upper body strength. (Unlike Sean.)

 

To hear Luke describe his career, he cornered the market as construction worker #1. However, his IMDB page is actually quite impressive, spanning his career. After his daughter’s diagnosis, he took a step back from his acting career, as his focus had changed.

 

He noticed a recurring and foundational question when it came to asking about researching his daughter’s rare disease. “Is there a mouse model?” Based on the constant dead end of that question, Luke and his wife began the “We Need a Mouse” campaign, which brought up the reality of rare conditions needing more research, by utilizing a cute phrase that has been shared by tens of thousands of people, including children, songwriters, and even puppets.

On August 22, Luke and his wife are excited to perform in a play called Love Letters.  It’s a Pulitzer Prize winning play which will take place at the Roy and Diana Vagelos Education Center at Columbia University benefiting formance support the treatment program within the Center for Rare Pediatric Genetic Diseases at Columbia University Medical Center –. To find out more and get tickets click here.

 

Thanks for your leadership, Luke!

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