We are in search of a caring, fun, and strong person(s) to provide respite care in the afternoons, and some weekends for Cecilia. Cecilia is 10, and suffers from CLN3 Batten Disease. She is blind, cognitively delayed, and requires one on one attention at all times due to her vision, impulsive and sometimes aggressive behavior. Cecilia is a sweet girl who loves art, music, and playing outside. Caregiver will be an additional support to the family, working mostly during th
We are so excited to announce that registration is finally open for the 2020 Expect Miracles 5k is now open! REGISTER NOW The 2020 Expect Miracles 5k will benefit medical research with the Beyond Batten Disease Foundation AND the Fries Family for expenses associated with clinical trials, a new van that will accommodate the increasing behavioral and mobility needs that Batten Disease brings.
Please join us at a NEW location on May 31, 2020 at Westminster City Park!
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