Our Story
Meet the Family
Why We Started
Our story began in 2008 when our daughter, Ali, told us she had an eyeball headache behind her eyes and blurred vision. Blood test results were shocking—pointing to a little-known autoantibody against a protein called aquaporin-4 (AQP4). Our beautiful Ali was diagnosed with Neuromyelitis Optica (NMO), a life-threatening autoimmune disease that attacks the central nervous system. At only 14 years old, the doctor estimated Ali could become blind and paralyzed or not with us at all within the next four years.
Her out-of-the-blue diagnosis changed everything. At the time, so little was known about this rare “orphan” disorder, and it was difficult to find anyone with the same diagnosis. We spent countless hours scouring the Internet and looking for support, only to be left with few answers.
Accepting the frustration and despair wasn’t an option. On August 1, 2008, we founded The Guthy-Jackson Charitable Foundation and immediately started funding research to help solve the mysteries of NMO and pioneer solutions. Instead of relying on traditional science models, we connected experts within and beyond the field of neurology and from around the world to share research and enable life-saving discoveries.
Against All Odds
Taking on a rare disease requires commitment. Since 2008, we have invested more than $70 million and funded 90+ research studies to understand how NMO works and accelerate solutions. As a result, our work has revolutionized the field. We formed an international panel to rewrite the diagnostic criteria for NMO to speed accurate diagnosis and best therapy. We sponsored the CIRCLES study with its dedicated biorepository to understand the NMO patient experience and provide data and biospecimens for groundbreaking discoveries. We have hosted annual RoundTable Conferences for researchers and Patient Days for patients and caregivers-inspiring all stakeholders on our mission. We created the GJCF International Clinical Consortium for NMO, led innovative clinical trial designs and brought the industry together in ways rarely done. After investing time and so much heart into research, three therapies were approved for NMO from 2019-2020. There had been none for over 100 years.
Where We are Now
Today, Ali lives a full life, as do countless other NMO patients who were struggling with frightening relapses and poor quality of life just a few years ago. Incredible discoveries and quantum leaps have been made-yet there is more to do to end NMO. Even so, we stand at a new threshold with the belief that NMO can be solved. Our priorities continue to push beyond what many thought would be impossible.
Mission-critical goals now include predicting and stopping relapses and retraining the immune system to end the disease altogether. With the help of our growing patient community, academic and industry partners, we won’t stop until we’ve found a cure!
With hope & gratitude,
Victoria Jackson, Bill & Ali Guthy
Our Vision
To live in a world in which no one suffers from Neuromyelitis Optica.
