We traveled to St. Louis, MO to the Annual BDSRA Family Conference. We didn’t know what to expect, but we didn’t expect what we found.

The support is overwhelming. The doctors, researchers, families are incredibly genuine, helpful, and willing to have one on one conversations. I was floored when one researcher said, “come and find me, we’ll talk.” Cory talked to him for over 3 hours. Like, who does that?!

The hardest thing we’re coming to terms with is the fact that we don’t think there will be a cure within James’s lifetime.

It's heartbreaking. But we plan to raise money, somehow, to help find a cure for James and all others affected. We ask for your help to help us advocate for this awful rare disease. Help us keep James as he is for as long as we possibly can.

More to come!

Much love from us!