National Volunteer Week spotlight: Julie Lopez

Julie Lopez is a mom of five kids, including her youngest, Isabelle, who has Bohring-Opitz Syndrome. Julie serves as the volunteer lead of the ASXL Professional Network & Research Committee, where her role includes managing the ARRE Foundation’s research grant program and growing the network of medical professionals and researchers who have experience or interest in ASXL syndromes.

"I volunteer with ARRE Foundation to help find answers," Julie says. "Sometimes, like when Izy was vomiting daily and having horrible painful bouts of constant retching, I have been desperate for answers. Over and over we have gone to the doctor, but so many times the only answer I got was a shrug, another normal test, or medications that don't work or even make things worse."

Then, it clicked for Julie. "I wasn't getting answers because I was looking in the wrong place," she remembers. "Doctors only know what scientists have discovered. When the opportunity came to help the ARRE Foundation fund those scientists in their quest for answers, I knew I needed to be a part of it -- for Izy and for all of the ASXL children."

Thank you to Julie and all of our volunteers!