She’s a huge part of my ‘WHY’ and she’s loved by all who get the honor to meet her. Izzie Mae is my oldest daughter and she lives with a rare neurogenetic condition called Angelman Syndrome.

AS is characterized by developmental delays, lack of speech, seizures and severe sleep issues, so life isn’t always easy for Izzie Mae. However, don’t think for a moment that she doesn’t live life to the fullest! Even better, she continuously exceeds expectations and thrives in so many ways.

When my wife and I received her diagnosis in September of 2018, we decided right away that it would not define her - that no limits would be placed on her life. We’re extremely blessed to have doctors, therapists, aides and teachers who subscribe to that belief along with us. Today, Izzie brightens any room she steps into and any life she encounters. We’re just honored to be along for the ride and watch her defy the odds.

Get this: Angelman Syndrome will be cured! No kidding - we’re living in very exciting times. Multiple human clinical trials involving gene therapy are ongoing and we have so much to be encouraged about. In fact, no other neurogenetic condition is closer to a cure than AS.

Onto the giving… Because AS is so rare, funding depends largely on families living with it directly, like ours. Reaching the cure is a marathon, but we're here for every mile of it. We believe Izzie Mae will do all things — 100%.

The Rx Grid makes an annual contribution to the Foundation for Angelman Syndrome Therapeutics (FAST), one of the most focused and promising organizations working toward a cure. I have also served FAST as a volunteer member of their Advisory Council and as an educational content creator, in honor of Izzie Mae.

Good days are ahead.

Easton