A special thank you to Trust the Journey Project for sharing our story with a special focus on grief and finding meaning.

Those who face rare diseases are nothing short of inspiring. These are people who don't take "firsts" for granted...

Before this all started, I didn't know physical therapy for a baby was a thing. Now, "How can I turn this into an exercise" consumes me.

“So, I didn’t understand the results of her genetic tests – what did the neurologist say?” Everything stopped. I glanced at the doctor...

Exciting things are happening in Angelman Syndrome research! OV101 | CRISPR/Cas9 | Gene Therapy | #cureangelmannow

After much reflection, I've decided it's time to launch The CAMI Project. Here are my hopes for this blog and this community!

One year ago, worries of missed milestones launched months of specialists and tests. Recently, we received a diagnosis we never saw coming.