What We Do
Founded in 2022, Beta Spectrin Foundation strives to help affected families by:
Providing the latest scientific information
Connecting with world renowed medical and research teams
Organizing social events and activities for broader awareness
Fundraising
Our Mission
To advance the advocacy, awareness and treatment of the neurological genetic mutation SPTBN1
through education, research and comprehensive support.
Why Betta Fish?
Often associated with strength, courage, and determination,
betta fish are ideal symbols for overcoming challenges in life.
Betta fish are known for their grace, beauty, power, and most importantly, their fighter spirit.
They are able to not only survive, but adapt and thrive in environments many others may not.
They face their obstacles head on.
Much like this community.
We are a thriving and determined community fighting for more advocacy,
research as well as treatments and potential cures.
We will keep moving. We will keep swimming. We will keep fighting.
The fighter in you is literally built into your DNA.
We can do this together.
SPTBN1 picked the wrong families to mess with!
Join us in this fight.