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.
Co-founded ADCY5.org, the foundation for ADCY5-related dyskinesia. ADCY5.org supports world-renowned researchers who study the gene and its variant. She continues to build a community of hundreds with this disease, when they started with only 1.
She is an advocate of genetic testing, shared data, and patients owning their data. Her focus remains to help all Rare Disease patients find testing and teach them how to maintain health records.
Gay successfully advocates for access in a variety of environments including, but not limited to, genetic testing ,education in classrooms, private, state, and federal insurance, as well as collaborating in the Rare Disease space to gain access to clinical trials and medical therapies.
In addition to being the keynote speaker for the Biocom Annual Dinner, she has spoken to audiences of up to 1,000 attendees about her experience of having an undiagnosed child for 15 years, getting a diagnosis through Whole Genome Sequencing, and building a community around an unknown genetic disease.
Disclaimer: Gay is speaking to us today as a parent and patient advocate and her opinions are her own. She is currently the Director of Patient Advocacy & Engagement at Neurogene Inc. and applies her life learning to help other Rare Disease families.
Links:
Gay: https://www.linkedin.com/in/gaygrossman/
Foundation: www.ADCY5.org
Lilly: www.LillyGrossman.com
https://www.linkedin.com/in/lillygrossman/
