Advocate

Liz

Jan 23, 20214 min read

Celebrating a Year of Growth! (And the hard moment that helped me appreciate how far we've come.)

In honor of Cami's 3rd birthday, we're celebrating the inchstones and progress she's made over the past year!

Liz

Apr 9, 20206 min read

5 Recommendations for "What To Do" After Receiving Your Child's Rare Diagnosis

The worry and stress will never go away. But, I'm happy to report that one year later, the weight has lifted.

Liz

Feb 28, 20204 min read

Why Rare Disease Day Matters

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

Liz

Nov 22, 20195 min read

Epilepsy: 3 Lessons Learned

November is National Epilepsy Awareness Month. Of all we’ve faced, epilepsy has been (by far) the most complicated and worrisome.

Liz

Nov 17, 20192 min read

Go, Baby, Go!

Cami receives a GoBabyGo motorized car adapted to her special needs offering her more independent, age-appropriate mobility!

Liz

Oct 31, 20193 min read

A Year of Physical Therapy in GIFs

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.

Liz

Sep 18, 20192 min read

Exciting Announcements in Angelman Syndrome Research

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

Liz

Sep 12, 20193 min read

Our Path to Diagnosis Part I: Early Signs

Cami was diagnosed with Angelman Syndrome at 15-months, but I knew when I was pregnant that something wasn't right. Here's how...

Liz

Aug 29, 20192 min read

The Smile Changing My World

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