Gay has been active in the Rare Disease community for over two decades and continues her efforts to build and support patient and family advocacy. After her daughter, Lilly (25), an n-Lorem patient, was diagnosed with ADCY5, Gay co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia. ADCY5.org builds a community for hundreds with the disease and supports world-renowned researchers who study the gene and its variant.
Gay recently started a role with Ciitizen, Invitae’s data platform, where she oversees patient engagement. Gay states, ”I have a strong desire to help families understand the importance of both genetic testing and collecting medical records which can now be used to support or take the place of natural history study efforts thanks to Ciitizen.” Ciitizen is a complete clinicogenomic offering comprised of deep, patient-centric genetic, clinical and patient reported data. The platform provides access to patients’ medical records as they travel from provider to provider for free.
Gay is the former Director of Patient Advocacy & Engagement at Neurogene Inc., where she served for nearly 5 years. She currently volunteers as a patient ambassador for Illumina and is on the Executive Council of the Rare Advocacy Movement. Gay applies her life learning to help other rare disease families and successfully advocates by speaking in a variety of environments including, but not limited to, educational classrooms, private, state, and federal insurance, as well as collaborating in the rare disease space to gain access to clinical trials and medical therapies.