How did you get into it?

So my mom has the rare disease lipodystrophy.

She has familial partial lipodystrophy type 2.

So I was a family member for my whole life, and I saw my mom navigating her rare disease diagnosis.

She wasn't diagnosed until 2011, and so she lived her whole life without a diagnosis with a bunch of very strange symptoms and feeling like she was crazy, even being told that that she was just a non-compliant diabetic by many doctors and that she was doing something wrong.

So the diagnosis was really validating for her and for the whole family.

And I watched her found the organization, Labor Dystrophy United, with a group of patients and work in the space for about eight years before moving on to a different role in rare disease.

How did you arrive at that? What have been the discoveries and how have you gone about it?