3rd Annual Achondroplasia Research Conference
Last weekend, The Chandler Project hosted its 3rd Annual Achondroplasia Research Conference. With a sigh of relief, I can say, it was a success with…
SBS Dateline: Born Small
I had the honor of being part of this project by the Special Broadcasting Service (SBS), Australia’s most diverse broadcaster, that focuses on the trial…
Rare Disease Day 2021
It’s Rare Disease Day! Today, I’m wearing stripes to acknowledge those living with a rare disease. A disease is a “disorder of structure or function in a human…especially one…
What Matters to Me
It’s been a year since Love What Matters reached out and asked to share my story. My thoughts and words from this passage are still…
Rare Disease Day on Capitol Hill
Today is #RareDiseaseDay – a day for advocating, not really celebrating IMO. Let’s celebrate our differences by who we are as individuals, not by our…
Food and Drug Administration
On May 11, 2018 I had the opportunity to speak on behalf of myself at the Food and Drug Administration. I spoke in support of…