Author & Advocate

Protect Our Care Press Conference

Rob & I represent Little Lobbyists at a Senate press conference convened by Senator Chris Murphy (CT), Senator Bob Casey (PA), and Senator Doug Jones (AL). Preserve Medicaid!

"Writing, Identity & DNA"

8/21/18 Who Lives Like This: Jason, Elizabeth and Jeneva had a lively discussion about the labyrinthine path to diagnosis, the conflict of knowing or not knowing what's happened to your child and the randomness of rare genetic mutations that might be "discovered" but have no applicable treatments. 

Rare Disease Day Proclamation

2/26/18: Robert and I accept the Rockville City Council's Rare Disease Day Proclamation on behalf of the National Organization of Rare Disorders

Solving the Mystery of Rare Diseases

October 2013: Dr. Jimmy Lin of Rare Genomics Institute invites his audience on a compelling and emotional journey into the lives of children living with rare diseases. He paints a picture of hope through technology while leveraging crowdfunding models to help families on the road to discovering life-saving therapies for rare diseases.

Rare Genomics Institute

At Rare Genomics, we are more than just an organization. We are a community dedicated to helping rare disease patients find hope for a cure. We work alongside patients and their families, providing them with the necessary tools, knowledge, and connections so that they can better understand the cause of their disease.