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