Finding Joy 

First, I'd like to start by saying Thank You for all of your continued support. Rare disease research can sometimes feel like a long and lonely road, but your support brings connection, hope, and momentum to work that truly takes time. Your generosity continues to move research forward in ways that simply wouldn’t be possible without this community. Below is an update on Nora’s ongoing diagnostic research, as well as a look at another exciting project you helped fund this yea

Our long-awaited trip to NYC & Mt. Sinai finally arrived! In July of this year, we reconnected with Dr. Eva Morava, a clinical geneticist...

We are incredibly excited to announce that we are partnering with Dr. Eva Morava at Mt. Sinai Medical Center to create a research study...

This post is a long time coming. One thing I've unfortunately come to realize over the past 4 years is that scientific research on a...

I often write about platitudes people tend to say to you when something bad happens. Seemingly well intentioned phrases that further...

“I Control My Own Happiness” A line from my kindergarten son’s daily affirmation song. A nice sentiment that begs the question: What...

If you've had a child with infantile spasms, you know that there is a spectrum of outcomes associated with IS and genetic disorders. And...

Last Saturday was Undiagnosed Day. A day I had no idea existed until very recently When Nora was first diagnosed with Infantile Spasms, I...

Since I've started sharing Nora's journey publicly, I've had several newly diagnosed families reach out to me. Each time, I am brought...