The clinical finding that came from a Facebook cover photo
How a cover photo I made for a private Facebook group of Gaucher type 2 families led to a facial feature NIH researchers now describe for doctors.
Featured writing
Sharing Our Stories Is a Gift, and It Costs Us Every Time
What telling our story costs a parent, and what the people who ask can do about it.
Who Gets to Decide What a Family Wants to Know
A physician said parents don't want to know. I argued back, and it took me years to understand why.
Explore the writing
Read on Substack & LinkedInADVOCACY AND TELLING OUR STORIES
Newest first
The Hardest Thing I Ever Made
Weeks after her diagnosis, I made a video in Hannah's voice. I have never watched it again.
Sharing Our Stories Is a Gift, and It Costs Us Every Time
What telling our story costs a parent, and what the people who ask can do about it.
We Closed Our Little Miss Hannah Foundation on Our Best Year
People say "I'm sorry." We closed on our best year, by choice.
FAMILIES AND COMMUNITIES WE OVERLOOK
Newest first
What 'Underserved' Really Means in Rare Disease
It's a messier word than we treat it, and the families who need the most often never ask.
She Built It From Nothing
After years of nothing, the clinical trials finally arrived. You would think that's the happy ending.
DIAGNOSIS, TESTING, AND RESEARCH
Newest first
The clinical finding that came from a Facebook cover photo
How a cover photo I made for a private Facebook group of Gaucher type 2 families led to a facial feature NIH researchers now describe for doctors.
Who Gets to Decide What a Family Wants to Know
A physician said parents don't want to know. I argued back, and it took me years to understand why.
The Geneticist's Office
No one tells you the diagnosis isn't the hard part.
Additional articles
Your Rare Disease Experience Is Bigger Than One Community
ADVOCACY AND TELLING OUR STORIES
Knowing one disease deeply isn't the same as being ready to work across rare disease.
Steps to Take After Receiving a Rare Diagnosis (2017 to 2018)
DIAGNOSIS, TESTING, AND RESEARCH
The first things to do when you don't know where to begin.
5 Steps to Becoming a Rare Disease Parent Advocate (2017 to 2018)
ADVOCACY AND TELLING OUR STORIES
Where to start when you never planned on becoming an advocate.
Bringing Rare Disease to Stanford's MedX (2017 to 2018)
ADVOCACY AND TELLING OUR STORIES
A rare disease parent's view on a stage built for the future of medicine.
A place to connect
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