Josie's Journey

 << My article in the special Capitol Theater edition of the El Goose Times >> During the thick of the pandemic in January of 2021, my then 13 year-old son Tanner had a Zoom guitar lesson with Rick Mitarotonda! I couldn’t believe this was really an option when I bought it for him during the holidays. They played for an hour and after the lesson Rick and I talked for a while. We talked about the pandemic, about the music biz, and Tanner’s guitar knowledge (I’m bragging). I told him about Tanner’s sister, Josie, and how she was born with this awful rare disease called FOXG1 syndrome and that I started a research foundation to find a cure for it.  With the coolest sincerity, Rick said, “Whatever I can do to help, please let me know.”  My eyes lit up. “Really?”  “Yes, ” he said. And he meant it.  When Rick put me in touch with his manager Ben, I knew I better hurry up and follow through because these guys were about to take off! You know how they say, yo...

  Josie was born the day before Thanksgiving 11 years ago and truly defined the meaning of giving thanks. Allow me to rattle the reasons why I am thankful. I am thankful for her pure joy. Her resilience. Her love. Her strength. Her energy. Her silliness.  I am so thankful that she gave me a purpose that I would have never known.  I am thankful that she gives me the courage to live my purpose, not only for her but for every child and adult in the world with FOXG1 syndrome , and more.  As a parent-led organization, we are actually improving the landscape for rare disease drug development. Why? Because we have no time to waste. We are helping contribute massively to science for major neurological diseases like autism, Alzheimer's, brain cancers, and more. No joke. Our work has the potential to solve major disorders that affect millions of people and knowing that fills me with even more motivation and inspiration - and gratitude.  I was able to dive in because of ...