Our connection to TANGO2 began with or son, Ryan. For fifteen years, we searched for an explanation for the mysterious spells of weakness and muscle fatigue that had affected him since he was a toddler. When he was finally diagnosed with TANGO2 Deficiency Disorder, we had an answer, but we also learned how little was known about the disease and how much work remained to be done.

Mike and I helped found the TANGO2 Research Foundation because we wanted to change that—not only for Ryan, but for every family who would come after ours. What began as a small group of families searching for answers has grown into a remarkable community of families, clinicians, researchers, and supporters working together to improve the lives of people with TANGO2.

Along the way, observations from Ryan’s own journey, including the unexpected difference we saw when he took a simple vitamin, helped contribute to research that ultimately changed how TANGO2 is treated. To us, that is what this community represents: the extraordinary things that can happen when families are heard, researchers and clinicians collaborate, and people are willing to invest in the possibility of something better.

Supporting the Foundation is deeply personal. Ryan will always be at the heart of why we do this work, but today we see every TANGO2 child and family as part of our extended family. We want them to have something we did not have for so many years—answers, connection, hope, and the knowledge that they are not facing TANGO2 alone.