Another Step Toward Answers: Project Genome

Dear friends and supporters, I want to share another initiative that gives me hope that the search for answers is continuing. A new patient-led project called Project Genome has been created to help people affected by post-drug syndromes organize genetic sequencing, laboratory results, and other data in one place. The goal is to explore an important question: Why do some people develop severe and persistent symptoms after taking a medication while many others do not? We do not yet know the answer, and genetics may be only one piece of a much larger puzzle. But asking these questions, collecting data, supporting responsible research, and bringing patients and scientists together are important steps forward. This is what our advocacy has always been about. Listen to patients. Investigate carefully. Support good research. Inform patients honestly. And build a safer system for future patients. I will continue following this project and the research taking place around PFS and other post-drug syndromes, and I will keep sharing meaningful developments with you. Thank you for continuing to stand with us. For Henry. For every son, daughter, husband, wife, mother, father, and friend whose life was forever changed. For all those we have lost. For the thousands still fighting. For every future patient. With gratitude, Erika