ABOUT US
Original Foundation - 2022
BFLS Incorporated was founded in 2022 by myself, Kearstyn, when my son Asher was diagnosed with BFLS. I found myself searching the internet for a community of parents who understood what my family was experiencing, and although I did find other families, I noticed there were countless organizations focused on specific genetic disorders, and not one was focused on BFLS. I decided to create BFLS Inc at this point and recruited others in our community as our organization grew to help with various activities throughout the year.
2023 and Beyond
As our organization has grown, we have sourced multiple professionals from across the world to join our Medical & Scientific Advisory Board to ensure our funds raised are best utilized to help progress research of PHF6 mediated genetic disorders and eventually provide funds to research treatment options.
Our executive board has grown to include 10 members, and our Medical and Scientific Advisory Board has grown to include 3 internationally accredited scientists and physicians.
Current Initiatives
Patient Recruitment:
The first goal our organization is focusing on is recruiting families to complete a Natural History Study survey, to compile a database of information for prospective researchers who are interested in BFLS research and we’ve partnered with CoRDS, Coordination of Rare Diseases at Sanford, based at Sanford Research Center, to coordinate this effort and house this information in their secure database.
Fundraising:
BFLS Inc is continuously hosting fundraising events in the Bakersfield, CA area, and we are currently expanding to encourage other BFLS families and supporters to host their own fundraising events using the Zeffy Platform. To view our upcoming events, click the link Events link.
For more information on hosting your own fundraising event, please contact us at the link below.
