Friends, I wanted to take this opportunity to share our family’s MED13L story and express our profound gratitude for the MED13L Foundation and organizations like RARE-X that support the Foundation in advancing research. Our son, Ilan, is a sweet, smiley, and fun-loving 11-year-old boy living with MED13L syndrome. Diagnosed at the age of 2, almost…
On February 26, 2024, I had the privilege, alongside nearly 1,000 other rare disease advocates, to speak to members of Congress and share my son Collin’s story and the challenges of MED13L. We put a spotlight on rare diseases. I stood alongside patients young and old, fellow caregivers, and parents who have lost their children…
It seems to me, we hope throughout our lives. When we’re young, we hope good things happen. As we age, we hope bad things don’t happen. In the end, we hope all we believed in comes to be. As I entered my parenting journey I was full of hope and dreams for my three children,…
