About Us

When Chris and I received Elise’s diagnosis, we were handed a single sheet of paper—just a few short sentences outlining Alexander Disease. I’ll never forget that sheet of paper for as long as I live.

Alexander Disease was written in all capital letters. It felt as if the paper was thrown directly into our faces, screaming at us and cursing everything we had ever known to be true. It mocked us for believing we ever had hope for Elise’s future… all while telling us absolutely nothing at the same time.

Our entire world fell apart in no less than five minutes. As parents, we were simply told to “not look up anything further online” because Elise’s condition was too dire, and any additional information would strip away our remaining hope for our sweet girl. Instead, we were instructed to go home and make the most of our remaining time with Elise, who had just recently turned three.

We were essentially sent on our way to begin grieving the loss of our beautiful, perfect child whose life hadn’t even had a chance to fully begin. At that time, there were no conversations about a cure for Elise’s condition. There was no information on where to seek treatment. No clinicians or researchers were readily accessible to guide us on managing Elise’s symptoms. Family support online was incredibly limited and often misleading.

We felt terribly isolated and profoundly lost. It wasn’t the doctors’ fault; no one was to blame. That’s simply where the Alexander Disease community stood just ten short years ago.

But “taking our child home” wasn’t enough for us. We knew we had to do something—whatever it might be. After some time to process the diagnosis, Chris and I realized we had two things that could—and would—power a movement.

We had love—a deep, all-consuming love for our daughter.

And we had hope—a belief that if we could raise awareness and funds, directing them to the right places at the right time, that hope would bring us closer to a cure.

That’s how love and hope became the foundation of Elise’s Corner. We have made incredible progress over the years, but it’s still not enough.

It will never be enough until the day another beautiful, blue-eyed girl walks into a doctor’s office with her parents and is diagnosed with Alexander Disease. Instead of going home to enjoy her remaining days, the doctors will be able to point that family toward treatment or a cure that will save her life.

We are so incredibly close.

Please join us as we advocate for the day when no one has to bear the incredible weight of Alexander Disease.