Your contributions fuels our mission. Every dollar helps us support families, create and distribute awareness tools, host educational events for families and medical professionals, travel (occasionally) and most importantly: research. Thank you!
Tag Archives: Filamin A
Ella’s Story 2022 Update
I’ve got a teenager! My daughter Ella Dupont Bedassie was born full-term at 39 weeks on August 7, 2008. Although she’d be slow to grow in-utero, Ella was born naturally and by all appearances healthy at 5 lbs, 6 oz. … Continue reading →
Posted in Stories
|
Tagged Angel, Filamin A, FLNA, Interstial lung disease, PVNH, X-Linked PVNH
|
Comments Off on Ella’s Story 2022 Update
Everlee’s Story
At 2 days old, we had no idea that a CT would change her life forever. Continue reading →
Posted in Stories
|
Tagged cortical malformation, Everlee's Story, Filamin A, FLNA, Lung disease, multisystem, PVNH, X-Linked PVNH
|
Comments Off on Everlee’s Story