Beck Fahrner Syndrome Foundation

The Beck-Fahrner Syndrome Foundation is a 501(c)(3) non-profit organization established in Anoka, Minnesota.  We are led by the volunteer efforts of parents with children affected by Beck-Fahrner syndrome, and are dedicated to creating a community of support and hope for those affected by this rare genetic disease.  Our mission is to accelerate full spectrum research to cure Beck-Fahrner Syndrome (TET3 deficiency) and to empower affected families with information, knowledge, and connectivity.  

Some of the fundraising goals we would love to accomplish with your help are:

- Develop a patient registry for Beck-Fahrner syndrome to help establish a profile/natural history of affected individuals and use the data to identify clinical features of the syndrome, while also connecting patients with researchers and medical/pharmaceutical professionals.

- To host virtual education sessions that invite expert professionals in subject areas related to Beck-Fahrner syndrome (i.e. geneticists, neurologists, OT/PT/Speech/Autism specialists).  If this pandemic ever lets up, we would love to eventual host an annual conference as a way for families to meet one another and attend educational sessions that share the latest updates in Beck-Fahrner syndrome research.

- And lastly, some of the associated symptoms and clinical features of Beck-Fahrner syndrome require affected individuals to undergo hospitalizations, surgeries, and other non-routine medial procedures.  We would like to create a care program within our organization that helps bring comfort to children with Beck-Fahrner syndrome who will be undergoing medical procedures that require significant recovery time by mailing a "care package" for families.