Support the Beros: Attending the Joubert Syndrome Conference

As many of you know, Zoe and Luca were diagnosed with a rare genetic disorder called Joubert Syndrome this fall. After a bit of research, we found more than we expected for such a rare condition, including a conference hosted by the Joubert Syndrome and Related Disorders Foundation, taking place this summer in Indianapolis. We believe this conference will be invaluable in connecting us with experts, resources, and other families going through similar experiences. Attending this conference will help us learn more about how to navigate Zoe & Luca's unique needs and perhaps even discover new therapies or treatments.

We're hoping to raise $1.500* to cover the costs (registration, lodging, travel) to attend this event.

We are eager to have this experience as a family as we continue to navigate this journey together.

*Any funds above $1,500 will be used for Zoe and Luca's ongoing weekly therapy services. Our insurance visits run out about halfway through the year. When they run out, we begin applying for and relying on grants, which are not guaranteed and increasingly more difficult to find.