About the Nonprofit
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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.
We appreciate your consideration in contributing an in kind donation for this event, and 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.
