Stories
Families fighting a hidden battle.
People with Blau often look well on the outside. They are fighting to keep their mobility, their eyesight and their health. These are their stories, in their families' own words.
Where it began
Lexi's story
Lexi was the original inspiration and founder of the Cure Blau Foundation. We ran out of time before we could find a cure for Lexi, but we carry on in her legacy for those who continue their battles with Blau.
When our daughter Lexi was born we could never have imagined the journey we were about to undertake. This is our story about how we came to be medical researchers heading a non-profit organization focused on curing a rare genetic syndrome we had never even heard of.
In their own words
Every family's path to a diagnosis is different.
Do you have a story to share?
We would love to hear from you. Write to us at blaufoundation@gmail.com or send a message through our contact form.
Blau in the news
Coverage that brings Blau into the open.
Articles from media outlets around the world sharing patients’ journeys with Blau syndrome.
Read the coverageLiving with Blau
Hear patients describe life with Blau, in their own voices.
“Living with Blau: Voices From the Community” features Lauren Ennis and Kathleen Mears, who has lived with Blau syndrome for more than 60 years.
Watch the videos
Stories change minds. Data changes medicine.
If you or your child has Blau syndrome, add your experience to the Blau Syndrome International Registry. Researchers use it to see the whole disease, and every entry brings a treatment closer.