Podcast: A mother’s fight
Recently, I had the privilege of sitting down with Angela Soudi for one of the most honest conversations…
Gladiator Summit 3: The High, The Purpose, and the Grief That Followed
There are moments in life that stay with you forever. For me, Gladiator Summit 3 was one of…
Family and Friends After a Rare Disease Diagnosis
Best friends and family are the greatest thing in the world, right? Right… until you are no longer…
Resilience Is Not Positivity
People often misunderstand resilience. They think resilience means being positive all the time. Smiling through pain. Pretending everything…
Religion and Rare Diseases
One of the hardest parts of living with a rare disease is not always the disease itself. Sometimes…
Giving advice to people living with a rare disease has become far too casual.
Please do not ask me if I have tried going vegan, gluten free, drinking celery juice, or eating…
Is Ignorance Bliss?
In 2018, when I was advised to undergo genetic testing, I received two completely different kinds of advice.…
Lina El Zein: More Than a Diagnosis
I have spent most of my life building brands, leading businesses, and creating spaces where people feel inspired…
Zane’s graduation
I couldn’t stop crying while looking at him….When I was his age, I loved this song…..
