With a diagnosis that nearly stole my child’s life. From that moment forward, I transformed pain into purpose.
I now lead national efforts to advance legislation, influence federal health policy, and push for meaningful change across the FDA, CMS, and NIH. I work shoulder to shoulder with patients, families, researchers, and lawmakers to ensure the rare disease community is no longer excluded, ignored, or forgotten.
Through storytelling, grassroots mobilization, and tireless policy advocacy, I fight for a future where rare is not a reason to be left behind.
This is more than advocacy—it’s a movement.
And we are just getting started.
Media interviews:
Check out The Galactosemia Podcast by Ryan and Jill: When Every Day is Advocacy with Gillian Sapia
Interview by Rachel Scott: Medicaid: Millions may soon lose Medicaid
An RN’s Journey Managing Her Daughter’s Rare Disease-Ailthea Athans
Teaching Kids about Rare Disease- Oncodaily
