“Your Daughter Has a Fatal Illness...”

communityFor any parent, hearing those words could only be imagined as their worst nightmare. But that was the fear that came horrifyingly true five years ago when my beloved teenage daughter Ali tested positive for a rare “incurable” autoimmune disease that can cause blindness, paralysis, seizures, and worse — and she was given as little as four years to live. Refusing to accept those odds, in a heartbeat I went from my former career as a cosmetics entrepreneur to joining with my husband to create a foundation devoted to finding a cure. 

From Mascara to Medicine, and in search of a Miracle—(I know, lot’s of M’s!)—the book, Saving Each Other, began as my attempt to feel my way through the darkness. After hitting a writing wall or two, I was eventually joined by my miraculous co-author and daughter Ali, a young woman who today has defied every dire prediction. But our story, she has wisely pointed out, isn’t just about us. 

It’s about what you do when your worst fears come true, about what to do when you’ve hit your own walls, about knowing you’re not alone, and that by teaming up to work together with others it’s possible to learn to see anew — even in the dark. 

Saving Each Other is also about creating community and hopefully inspiring a conversation about the power of collaboration and “thinking outside the compact.”

We welcome one and all at the table to be part of our extended family, regardless of whatever challenges you may be confronting… or not. Whether your dream is to cure a rare disease or to rebound after a setback or to explore the miracle-making resources already at your fingertips, we have suggestions and strategies — from a COMMUNITY section about Therapeutic Storytelling to regular Saving Each Other blog posts aimed at serving new discoveries and hopeful inspiration we come across.

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The Guthy-Jackson Charitable Foundation’s mission is to fund basic science research to find answers that will lead to prevention, clinical treatments, and an eventual cure for NMO Spectrum Disease.

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