Sunday, July 21, 2013

Microvillous Inclusion Disease Network

We had our first annual meeting at the Oley Conference on the Cape this year. A third of the North American families met as a subcommittee (read: grillin and chillin), which is ironic considering none of our MID kids actually eat. These evenings gave me a shot in the arm, and a conviction that these kids may have challenges, but that doesn't mean they are sick.

I love Oley. Just seeing the teenagers slouching around and being teenagers with their backpacks and curly tubing, infusing through all their drama, makes me tear up. As I follow the papers coming out and the new clinical trials being planned for regenerative medicine for the small intestines and gene therapy for single gene mutations, I know there are legions of men and women working to make our kids lives safer. And I truly believe this is something we will see in our lifetime.

Faith, hope and love.