Born Fierce. Living Strong.

BFLS Incorporated

A Börjeson-Forssman-Lehmann Syndrome 501(c)(3) Nonprofit

“Less than 100 cases in the world”

That’s what the geneticist said, and then gave a research paper from the 1960s about BFLS and sent on our way. We then started the journey to research more to understand how to best help support our 4 month old, Asher, who had just been given the diagnosis of BFLS after months of searching for a diagnosis had come to an end following comprehensive genetic testing.

about us

Our Organization

BFLS Inc is a registered 501(c)(3) non-profit organization founded to create awareness and raise funds for research for patients and families affected by the rare genetic disorder Borgeson Forssman Lehmann Syndrome. We are the only non-profit dedicated to BFLS awareness and research where families can find a sense of community and those who support our organization are able to support patients worldwide and locally to ensure access to future treatments and hopefully a cure in the future!

founder intro

Mom on a Mission

to raise awareness and funds for the rare genetic disorder Börjeson-Forssman-Lehmann Syndrome, or BFLS.

Our goals:

  • gain exposure for this rare disorder

  • fund research to mitigate symptoms through gene therapy

  • provide assistance to BFLS families in need