As They Wish

As They Wish

An Evening of Art & Science: Everything Matters, Opening Remarks

by Ivana Polonijo

Dobro veče, kako ste? Dobrodošli u ovaj prekrasan prostor! Hvala što ste se odazvali našem pozivu. Ja sam Ivana Polonijo.

This was Croatian for Good evening, how are you all doing? Welcome to this beautiful space! Thank you for responding to our invitation.

My name is Ivana Polonijo and I am from a little country on the Mediterranean Sea called Croatia. I moved to the United States almost 15 years ago and one thing that still never ceases to amaze me is how much people here love the movie Princess Bride. Being a holder of an American passport now myself, I love it too. Are you familiar with it?

Café Medium Podcast: Everything Matters

Café Medium Podcast: Everything Matters

Understanding the Fight Against Batten Disease

Café Medium podcasts explore the world from the perspective of Portland, Oregon and the Pacific NW through conversations with dedicated, active, community-minded individuals.

by Lathen Gorbett & Karli Petrovic
with Beau James, Suzette James, Margie Frazier, Christina Amri, Scott Friedman and Ivana Polonijo

In this episode we’re going to explore the world of Batten Disease. Through a series of interviews and conversations over the course of a couple of weeks, we have collaborated with some of the people at the helm of creating a national voice for Batten Disease.

How One Family is Fighting for Maya

How One Family is Fighting for Maya

#FightingforMaya: One Family’s Battle to Save Their Daughter

When Beau and Suzette James noticed worrisome developmental changes in their daughter Maya, they immediately sought answers. Five years later, the family has successfully rallied a powerful, determined community around saving her life.

by Karli Petrovic

Maya James is a typical 13-year-old girl. She likes Colbie Caillat and sometimes thinks her three younger brothers are annoying. Her infectious smile lights up a room. She’s observant and funny and almost endlessly positive. Maya is a force. She also happens to have a rare disease called Atypical TPP1 Deficiency.