Floating-Harbor syndrome advocacy
Rare doesn't
mean alone.
Floating Harbor stands with families raising children who have Floating-Harbor syndrome (FHS). We help them get the right school support, find each other, and understand the condition.
What is FHS?
A rare genetic condition that most people, including many doctors and teachers, have never heard of.
gene. FHS is caused by a change in the SRCAP gene, usually a new change that wasn't inherited from either parent.
FHS was first described. It's named after the two hospitals where the first patients were seen: Boston's Floating Hospital and Harbor General in California.
Researchers identified SRCAP as the cause, so a genetic test can now confirm a diagnosis.
/images/ethan-hero.jpgWhy we exist
Ethan's story
Ethan has Floating-Harbor syndrome and cerebral palsy. He is nonverbal, has been through more than 20 surgeries, and brings sunshine to the people around him. This summer he won gold in Special Olympics bowling.
His mom, Heather Russell, has spent years fighting for the education he's entitled to. Floating Harbor grew out of that fight.
Read Ethan's story“He would be robbed of the basic things children without medical issues and special needs get from public education.”
Heather Russell, Founder & CEO
What we do
Three ways we help families
Advocate
Special-education rights, IEPs, and accountability, so children with FHS get the education the law guarantees.
02Connect
A newly diagnosed family should never feel like the only one. We help families find each other and share what works.
03Assist
Our Family Assistance Fund helps with costs ordinary support doesn't cover, like alternative schooling, therapies and equipment.
Just got an FHS diagnosis?
Start here. Heather has walked this road, and she'd like to hear from you.
Write to Heather