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Lexi's Story

When our daughter Lexi was born we could never have imagined the journey we were about to undertake. This is our story about how we came to be medical researchers heading a non-profit organization focused on curing a rare genetic syndrome we had never even heard of.


Keira's Story

With the advent of meaningful genetic therapies and increase interest in the genetic etiology of Blau Syndrome, it is our family's hope that an actual cure may be on the horizon-- one that would help her live a hospital, pain, and treatment-free life. We would love for you to partner with us on this journey!


Kathleen's Story

Brian loved life and fought for it more fully than anyone I’d ever known.  I had life. Brian would have done anything for life. To waste my life was to disgrace Brian’s memory and all that he loved.


Addison's Story

As Addinson’s mom, my hope is for her to live as normal of a life as possible. I want her to be happy, pain free, and able to do what anyone who doesn't have Blau Syndrome can do.

Do you have a story to share?
Contact us at We would love to hear from you!

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