Special Engagements & Media

 As a rare disease advocate and mom, I love engaging with members of the community with different backgrounds and stories.  By sharing stories, we can all learn more about one another, raise awareness, and work toward a change for the future.  When I launched this website in August 2022, I never imagined inspiring as many as I have.

Although I wish we were not part of the rare disease community; I have accepted that's where we are and hope that our story continues to inspire members of the community. I will never claim to know everything, but I welcome the opportunity to share my experience.